Fast Fact and Concept #033: Ventilator Withdrawal Protocol...

Fast Fact and Concept #033: Ventilator Withdrawal Protocol (Part I)

Autthhoorr((ss)):: von Gunten, Charles; Weissman, David E Noottee:: Thhiiss iiss PPaarrtt II oof aa tthhrreeee-ppaarrtt sseerriieess; PPaarrtt II II wwiill ll rreeviieeww ussee oof sseeddaatt iinng meeddiiccaattiioonn foorr veennttii llaattoorr wwiitthhddrraawwaall aanndd PPaarrtt II II II wwiill ll rreeviieeww iinnfoorrmaattiioonn foorr faamiill iieess. Once it is decided that further aggressive medical care is incapable of meeting the desired goals of care for a ventilator-dependent patient, discussing ventilator withdrawal to allow death is appropriate (see Fast Fact #16). Such a decision is never easy for family members, doctors, nurses, and other critical care staff. All members of the care team should be involved and appraised of the decision-making process and have the opportunity to discuss the plan of care. Opptt iioonnss foorr VVeennttii llaattoorr WWiitthhddrraawwaall . Two methods have been described: Immediate extubation and terminal weaning. The clinician's and patient's comfort, and the family's perceptions, should influence the choice. In immediate extubation, the endotracheal tube is removed after appropriate suctioning. Humidified air or oxygen is given to prevent the airway from drying. This is the preferred approach to relieve discomfort if the patient is conscious, the volume of secretions is low, and the airway is unlikely to be compromised after extubation. In terminal weaning, the ventilator rate, positive end-expiratory pressure (PEEP), and oxygen levels are decreased while the endotracheal tube is left in place. Terminal weaning may be carried out over a period of as little as 30 to 60 minutes or longer (see ref. 2. for protocol). If the patient survives and it is decided to leave the endotracheal tube in place, a Briggs T-piece can be placed. PPrriioorr ttoo IImmeeddiiaattee VVeennttii llaattoorr WWiitthhddrraawwaall 1. Encourage family to make arrangements for special music or rituals that may be important to them. If the patient is a child, ask parents if they would like to hold the child as he or she dies. Make arrangements for young siblings to have their own support if they are to be present. (See Part III of this series for additional information for families) 2. Document clinical findings, discussion with families/surrogates, and care plan in the patient's chart. 3. The physician should personally supervise that all monitors and alarms in the room are turned off. Ensure that staff is assigned to override alarms that

cannot be turned off if they are triggered. 4. Remove any restraints. Remove unnecessary medical paraphernalia (e.g. NG tube, venous compression device). 5. Turn off blood pressure support medications, paralytic medication and discontinue other life-sustaining treatments (e.g. artificial nutrition/hydration, antibiotics, dialysis). Note: some families have difficulty accepting discontinuation of hydration/nutrition-these can be left in place if desired. 6. Maintain intravenous access for administration of palliative medications. 7. Clear a space for family access to the bedside Invite the family into the room. If the patient is an infant or young child, offer to have the parent hold the child. 8. Establish adequate symptom control prior to extubation (See Part II in this series). 9. Have a syringe of a sedating medication at the beside (midazolam, lorazepam) to use in case distressing tachypnea or other symptoms. At the time of ventilator withdrawal 1. Once you are sure the patient is comfortable, set the FiO2 to .21; observe for signs of respiratory distress; adjust medication as needed to relieve distress before proceeding further. 2. If the patient appears comfortable, prepare to remove the endotracheal tube; try a few moments of "no assist" before the endotracheal tube is removed. 3. A nurse should be stationed at the opposite side of the bed with a washcloth and oral suction catheter. 4. When ready to proceed, deflate the endotracheal (ET) tube cuff. If possible, someone should be assigned to silence, turn off the ventilator, and move it out of the way. Once the cuff is deflated, remove the ET tube under a clean towel which collects most of the secretions and keep the ET tube covered with the towel. If oropharyngeal secretions are excessive, suction them away. 5. The family and the nurse should have tissues for extra secretions, and for tears. The family should be encouraged to hold the patient's hand and provide assurances to their loved one. 6. Be prepared to spend additional time with the family discussing questions concerns. After death occurs, encourage the family to spend as much time at the bedside as they require; provide acute grief support and follow-up bereavement support. Reference: Adapted from: Emanuel, LL, von Gunten, CF, Ferris, FF (eds.).

"Module 11: Withholding and Withdrawing Therapy," The EPEC Curriculum: Education for Physicians on End-of-life Care. www.EPEC.net: The EPEC Project, 1999. Principles and practice of withdrawing life-sustaining treatment in the ICU. Rubenfeld GD and Crawford SW, in Managing death in the Intensive Care Unit. Curtis JR and Rubenfeld GD (eds) Oxford University Press, 2001 pgs: 127-147. Rate this fast fact and concept: 3 = Excellent, I'll definitely be able to use this information. 2 = Fair, I'll probably be able to use this information. 1 = Poor, I will not use this information.

Please e-mail suggested future topics for Fast Facts; Let us know how you used this material-send an e-mail describing the educational format and the learner reaction. Fast Facts and Concepts was originally developed as an end-of-life teaching tool by Eric Warm, MD, U. Cincinnati, Department of Medicine. See: Warm, E. Improving EOL care--internal medicine curriculum project. J Pall Med 1999; 2: 339-340. Copyright Notice: Users are free to download and distribute Fast Facts for educational purposes only. Citation for referencing: von Gunten C and Weissman DE. Fast Facts and Concepts #33: Ventilator Withdrawal Protocol, January, 2001. End-of-Life Physician Education Resource Center www.eperc.mcw.edu. Disclaimer: Fast Facts provide educational information, this information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Fact information cites the use of a product in dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used. Creation Date: 1/2001 Purpose: Instructional Aid, Self-Study Guide, Teaching Audience(s)

Training: Fellows, 3rd/4th Year Medical Students, PGY1 (Interns), PGY2-6, Physicians in Practice

Specialty : Anesthesiology, Emergency Medicine, Family Medicine, General Internal Medicine, Geriatrics, Hematology/Oncology, Neurology, OB/GYN, Ophthalmology, Pulmonary/Critical Care, Pediatrics, Psychiatry, Surgery

NNon-Physician: ACGME Competencies: Medical Knowledge, Patient Care Keyword(s): ICU Specific Disease and Organ System Category(s): ICU

Fast Fact and Concept #034: Symptom Control for Ventilator Withdrawal in the Dying Patient (Part II)

Autthhoorr((ss)):: Charles Von Gunten; David E. Weissman Noottee:: Thhiiss iiss PPaarrtt II II ooff aa tthhrreeee-ppaarrtt sseerriieess; PPaarrtt II rreeviieewweedd aa pprroottooccooll ffoorr rreemmooviinngg tthhee veennttii llaattoorr ((FFFF ##3333)), PPaarrtt II II II ((FFFF ##335)) wwiill ll rreeviieeww iinnffoorrmmaattiioonn ffoorr ffaammiill iieess. The most common symptoms related to ventilator withdrawal are breathlessness and anxiety. Opioids and benzodiazepines are the primary medications used to provide comfort, typically requiring doses that cause sedation, to achieve good symptom control. Concerns about unintended secondary effects, such as shortened life, are exaggerated, particularly if established dosing guidelines are followed (see Fast Fact #8). There is no medical, ethical or legal justification for withholding sedating medication, when death following ventilator withdrawal is the expected goal, out of fear of hastening death. However, increasing doses beyond the levels needed to achieve comfort/sedation, with the intention of hastening death, is euthanasia and is not acceptable/legal medical practice. Sedation should be provided to all patients, even those who are comatose. The dose needed to control symptoms will depends to some degree on the neurological status of the patient and the amount of similar medication used up to the time of extubation. Patients who are awake at the time of extubation or in whom significant amounts of opioids and benzodiazepines have been used previously, will require greater dosages or change to a barbiturate to achieve symptom control. Note: in all cases, a senior-level physician should remain at the bedside prior to and immediately following extubation until adequate symptom control is assured. Meeddiiccaatt iioonn PPrroottooccooll 1. Discontinue paralytics; Do not use paralytic agents for ventilator withdrawal. 2. Before ventilator withdrawal: Administer a bolus dose of morphine 2-10 mg IV and start a continuous morphine infusion at 50% of the bolus dose/h. Also, administer 1 to 2 mg of midazolam IV (or Lorazepam).and begin a midazolam infusion at 1 mg/h. Note: Sedation should also be administered to the comatose patient. For children, obtain dosing advice from a pharmacist or pediatric intensivist. 3. Titrate these drugs to minimize anxiety and achieve the desired state of

comfort and sedation prior to extubation. 4. Have additional medication drawn up and ready to administer at the bedside so it can be rapidly administered, if needed to provide symptom relief.

5. After ventilator withdrawal: If distress ensues aggressive and immediate symptom control is needed. Use morphine 5 to 10 mg IV push q 10 min, and/or midazolam, 2 to 4 mg IV push q 10 min, until distress is relieved. Adjust both infusion rates to maintain relief. 6. Remember that specific dosages are less important than the goal of symptom relief. A general goal should be to keep the respiratory rate < 30, heart rate < 100 and eliminate grimacing and agitation. 7. For symptoms refractory to the above treatments, use a barbiturate (e.g. pentobarbital), haloperidol or propofol. References Adapted from: Emanuel, LL, von Gunten, CF, Ferris, FF (eds.). "Module 11: Withholding and Withdrawing Therapy," The EPEC Curriculum: Education for Physicians on End-of-life Care.{ HYPERLINK "http://www.EPEC.net" }www.EPEC.net: The EPEC Project, 1999. Principles and practice of withdrawing life-sustaining treatment in the ICU. Rubenfeld GD and Crawford SW, in Managing death in the Intensive Care Unit. Curtis JR and Rubenfeld GD (eds) Oxford University Press, 2001 pgs 127-147. Rate this fast fact and concept: 3 = Excellent, I'll definitely be able to use this information 2 = Fair, I'll probably be able to use this information 1 = Poor, I will not use this information Please e-mail suggested future topics for Fast Facts; Let us know how you used this material-send an e-mail describing the educational format and the learner reaction. Fast Facts and Concepts was originally developed as an end-of-life teaching tool by Eric Warm, MD, U. Cincinnati, Department of Medicine. See: Warm, E. Improving EOL care--internal medicine curriculum project. J Pall Med 1999; 2: 339- 340. Copyright Notice: Users are free to download and distribute Fast Facts for educational purposes only. Citation for referencing: von Gunten C and

Weissman DE. Fast Facts and Concepts #34: SYMPTOM CONTROL FOR VENTILATOR WITHDRAWAL IN THE DYING PATIENT; February, 2001. End-of- Life Physician Education Resource Center www.eperc.mcw.edu. Need peer-reviewed information about Physician End-of-Life Educational material or resources??? Visit the End-of-Life Physician Education Resource Center (EPERC) at www.eperc.mcw.edu David E. Weissman, MD, FACP Editor, Journal of Palliative Medicine Palliative Care Program Director Medical College of Wisconsin (P) 414-805-4607 (F) 414-805-4608 Disclaimer: Fast Facts provide educational information, this information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Fact information cites the use of a product in dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used. Creation Date: 2/2000 Purpose: Instructional Aid, Self-Study Guide, Teaching Audience(s)

Training: Fellows, 1st/2nd Year Medical Students, 3rd/4th Year Medical Students, PGY1 (Interns), PGY2-6, Physicians in Practice


NNon-Physician: Clergy/Chaplains, Nurses ACGME Competencies: Medical Knowledge, Patient Care Keyword(s): ICU Specific Disease and Organ System Category(s): ICU

Fast Fact and Concept #035: Information for patients and famil ies about venti lator withdrawal (Part II I) 2nndd Eddiittiioonn

Author(s): Charles von Gunten , MD PhD and David E. Weissman, MD Note: This is Part I I I of a three-part series; Part I reviewed a protocol for removing the ventilator (FF#33), Part I I reviewed medicat ions for symptom control (FF#34). The physicianʼs counseling of families is a critical aspect of care for the dying patient who is to be removed from a ventilator. Ideally the family will be involved in the decision to withdraw the ventilator and thus apprised of the goals of care. Before withdrawal, the following issues should be discussed.

Potential outcome of ventilator withdrawal

Assuming all other life-sustaining treatments have been stopped, including artificial hydration and nutrition, there are several potential outcomes: rapid death within minutes (typically patients with sepsis on maximal blood pressure support), death within hours to days (see FF# 3), or stable cardiopulmonary function leading to a different set of care plans, including potential hospital discharge. If the latter possibility is realistic, future management plans should be discussed prior to ventilator removal, since some families may desire to resume certain treatments, notably artificial hydration/nutrition. Generally, by the nature of the underlying illness and the established goals, it is fairly easy to predict which category will be operative, but all families should be prepared for some degree of prognostic uncertainty (see FF #30).

The procedure of ventilator withdrawal

Never make assumptions about what the family understands; describe the procedure in clear, simple terms and answer any questions. Families should be told before-hand the steps of withdrawal and whether or not it is planned/desired to remove the endotracheal tube (see FF#33). In addition, they should be counseled about the use of oxygen and medications for symptom control. Assure them that the patientʼs comfort is of primary concern. Explain that breathlessness may occur, but that it can be managed. Confirm that you will have medication available to manage any discomfort.

Ensure they know that the patient will likely need to be kept asleep to control their symptoms and that involuntary moving or gasping does not reflect suffering if the patient is properly sedated or in a coma. Explain how the family, clergy and others can be at the bedside before, during and after withdrawal. If asked, explain that they can show love and support through touch, wiping of the patientʼs forehead, holding a hand and talking to him or her. Support the decision Even though a family is able to make a definite decision for ventilator withdrawal, such a decision is always emotionally charged. Families will constantly second-guess themselves, especially if the patient appears to linger following ventilator withdrawal. Physician support, guidance and leadership is crucial, as the family will be looking to the physician to ensure them that they are “doing the right thing”. Furthermore, it is common for families to have concerns that their decision constitutes euthanasia or assisted suicide̶explicit counseling from a physician will be needed. Finally, support needs to continue following death during the bereavement period (see Fast Fact # 22).

References Adapted from: Emanuel, LL, von Gunten, CF, Ferris, FF (eds.). “Module 11: Withholding and Withdrawing Therapy,” The EPEC Curriculum: Education for Physicians on End-of-life Care. www.EPEC.net: The EPEC Project, 1999. Principles and practice of withdrawing life-sustaining treatment in the ICU. Rubenfeld GD and Crawford SW, in Managing death in the Intensive Care Unit. Curtis JR and Rubenfeld GD (eds) Oxford University Press, 2001 pgs 127-147.

Fast Facts were edited by David Weissman MD, Palliative Care Center, Medical College of Wisconsin until January 2007. For comments/questions write to the current editor, Drew Rosielle MD: [email protected]. The complete set of Fast Facts is available at EPERC: www.eperc.mcw.edu Copyright//Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Citation for referencing: von Gunten CF and Weissman DE. Information for patients and families about ventilator withdrawal; Ventilator Withdrawal Protocol, Part 3. Fast Fact and Concept #35; 2nd Edition, July 2005. End-of-Life Palliative Education Resource Center www.eperc.mcw.edu .

Disclaimer: Fast Facts provide educational information, this information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Fact information cites the use of a product in dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used. Creation Date: 2/2001; 2nd Edition, July 2005 Purpose: Instructional Aid, Self-Study Guide, Teaching Audience(s)

Training: Fellows, 1st/2nd Year Medical Students, 3rd/4th Year Medical Students, PGY1 (Interns), PGY2-6, Physicians in Practice


Non-Physician: Clergy/Chaplains, General Public, Graduate Students, Lawyers, Patients/Families, Nurses, Social Workers

ACGME Competencies: Interpersonal and Communication Skills, Patient Care Keyword(s): ICU Specific Disease and Organ System Category(s): ICU

JOURNAL OF PALLIATIVE MEDICINEVolume 11, Number 2, 2008© Mary Ann Liebert, Inc.DOI: 10.1089/jpm.2007.0055

Impact of an Inpatient Palliative Care Team: A Randomized Controlled Trial

GLENN GADE, M.D.,1 INGRID VENOHR, Ph.D., R.N.,2 DOUGLAS CONNER, Ph.D.,3

KATHLEEN McGRADY, M.D., M.S., M.A.,4 JEFFREY BEANE, M.D.,5

ROBERT H. RICHARDSON, M.D.,6 MARILYN P. WILLIAMS, M.S., R.N.,7

MARCIA LIBERSON, M.P.H., A.C.S.W.,8 MARK BLUM, M.D.,9

and RICHARD DELLA PENNA, M.D.10

ABSTRACT

Background: Palliative care improves care and reduces costs for hospitalized patients with life-lim-iting illnesses. There have been no multicenter randomized trials examining impact on patient sat-isfaction, clinical outcomes, and subsequent health care costs.

Objective: Measure the impact of an interdisciplinary palliative care service (IPCS) on patient sat-isfaction, clinical outcomes, and cost of care for 6 months posthospital discharge.

Methods: Multicenter, randomized, controlled trial. IPCS provided consultative, interdisciplinary,palliative care to intervention patients. Controls received usual hospital care (UC).

Setting and sample: Five hundred seventeen patients with life-limiting illnesses from a hospital inDenver, Portland, and San Francisco enrolled June 2002 to December 2003.

Measures: Modified City of Hope Patient Questionnaire, total health care costs, hospice utiliza-tion, and survival.

Results: IPCS reported higher scores for the Care Experience scale (IPCS: 6.9 versus UC: 6.6,p � 0.04) and for the Doctors, Nurses/Other Care Providers Communication scale (IPCS: 8.3 ver-sus UC: 7.5, p � 0.0004). IPCS patients had fewer intensive care admissions (ICU) on hospital read-mission (12 versus 21, p � 0.04), and lower 6-month net cost savings of $4,855 per patient (p �0.001). IPCS had longer median hospice stays (24 days versus 12 days, p � 0.04). There were no dif-ferences in survival or symptom control.

Conclusions: IPCS patients reported greater satisfaction with their care experience and providers’communication, had fewer ICU admissions on readmission, and lower total health care costs fol-lowing hospital discharge.

180

1Department of Internal Medicine, 4Palliative Care and Internal Medicine Permanente Medical Group, Denver, Colorado.2Department of Senior Programs, 3Institute for Health Research, Kaiser Permanente, Denver, Colorado.5Department of Community Based Medicine, Kaiser Permanente Medical Center, San Francisco, California.6Palliative Care and Ethics Education, Center for Ethics in Health Care, Oregon Health and Science University, Portland,

Oregon.7Department of Nursing, Kaiser Foundation Hospital, San Francisco, California.8Department of Ethics, Kaiser Foundation Hospital, Portland, Oregon.9Palliative Care Service, Permanente Medical Group, Sacramento, California.10Care Management Institute, Kaiser Permanente, Oakland, California.

IMPACT OF AN INPATIENT PALLIATIVE CARE TEAM 181

INTRODUCTION

CARE OF PATIENTS with advanced illness has beenrecognized as suboptimal.1–8 Particularly in hos-

pital settings, patients and families have reported in-adequate pain and symptom relief as well as unwantedlife-sustaining treatment at the end of life.9–11 Assis-tance for patients and families as they attempt to un-derstand complex medical information including prog-nosis and treatment options appears to be less thanadequate.12 Hospice referrals tend to be initiated latein the course of illness despite the positive associationbetween hospice length of stay and family perceptionsof the benefits.13–15

In recent years, hospital-based palliative care (PC)programs have been developed to address these defi-ciencies.16–20 These interventions are designed to im-prove symptom management, help patients and fami-lies better understand prognosis and treatment options,clarify goals of care, and assist in planning for diseaseprogression.21–24

Interdisciplinary PC teams are believed to be par-ticularly helpful in addressing the full spectrum of pa-tients’ health, spiritual, and psychosocial needs, andaligning treatment choices with patients’ values andgoals.25

Evidence of the effectiveness of interdisciplinary in-patient PC in improving clinical outcomes, satisfac-tion with hospital care, and use of hospice is lim-ited.25–31 Information on subsequent health servicesutilization is even less available.28,32–34 There havebeen no prospective, multisite, randomized control tri-als to assess the efficacy of inpatient PC interven-tions.28,38–43

We hypothesized that an interdisciplinary inpatientpalliative care consultative service (IPCS) would dem-onstrate improved symptom control, increase patientsatisfaction with care and decrease the cost of healthservices received over the subsequent 6 months afterhospital discharge.

METHODS

Study design, protocol, and randomization

IPCS was a three-site, prospective, randomized trialcomparing outcomes of an IPCS to usual care (UC) inpatients hospitalized with a life-limiting illness. En-rollment occurred between June 2002 and December2003. Eligible patients were members of the same in-tegrated health plan from three regions: Denver, Col-orado, San Francisco, California, and Portland, Ore-

gon. The study was approved by the Institutional Re-view Boards of the health plan and hospitals.

Eligible patients were 18 or more years of age, hos-pitalized with at least one life-limiting diagnosis, andwhose attending physician indicated they “would notbe surprised if the patient died within 1 year.” The ef-fectiveness of this question in identifying patients whowere appropriate for palliative care services has beenreported previously.44–47 Patients were excluded ifthey had impaired cognitive status and no surrogate orwere currently enrolled in hospice or other PC stud-ies. Referrals were received from all medical servicesand inpatient units. Study enrollment occurred Mon-day through Friday.

Written informed consent was obtained from the pa-tient or proxy before study participation and random-ization. After a baseline questionnaire was adminis-tered the patient was randomly assigned to IPCS orUC using a computer-generated, randomized assign-ment list for each site. Following study randomization,IPCS was initiated for those patients randomly as-signed to the intervention arm.

San Francisco and Portland hospitals were part of amanaged care organization’s (MCO) delivery system.Denver’s community hospital had a contract with theMCO. The hospital size was 102, 225, and 383 beds,respectively. All hospitals had MCO hospitalist physi-cians. At two sites hospitalists served as the attendingphysicians. Portland’s hospital used a combination ofMCO hospitalists and primary care internists. The ma-jority of Portland patients (72%) were followed by hos-pitalists. All hospitals had social workers and chap-lains on staff that provided direct patient services toUC patients.

Description of the IPCS program

The IPCS teams included a palliative care physicianand nurse, hospital social worker and chaplain. In Den-ver and Portland the teams were newly formed for thestudy while San Francisco’s team had been operatingfor a year. All teams provided care in accordance withkey palliative care components which were adaptedfrom Weismann (Table 1).48 The teams assessed pa-tients’ needs for symptom management, psychosocialand spiritual support, end-of-life planning, and post-hospital care. All of the team’s efforts were based onthe patient’s individual goals of care.

The team met prior to each consultation to sharewhat was known about the patient from the medicalrecord, baseline questionnaire, and hospital providers.The entire team then met with the patient/family to ad-dress symptoms, diagnosis, prognosis, and goals of

GADE ET AL.182

care. Psychosocial and spiritual concerns were identi-fied and advance directive forms were discussed. Af-ter the patient/family meeting, the team convenedbriefly to synthesize a palliative care plan and orga-nize follow-up by team members. IPCS provided con-sultation on intervention patients to the attending, in-volved subspecialists and staff on all aspects of PC,including treatment recommendations. The team wasavailable Monday through Friday. A PC physician wason call after hours.

The teams collaborated with the attendings and dis-charge planners in preparing for the patient’s dis-

charge. The PC discharge plan was communicated tothe primary care physicians through documentation inan electronic medical record. If intervention patientswere readmitted to the hospital they were again fol-lowed by IPCS for PC needs.

To ensure treatment consistency there were bi-weekly telephone conferences among the three sites toreview cases and promote protocol adherence. Eachsite was visited early in the study to assess protocoladherence, and intervention patients’ medical recordswere reviewed to ensure that all treatment componentswere addressed.

TABLE 1. COMPONENTS AND CORE FEATURES OF A PALLIATIVE CARE CONSULTa

Components Core features

Setting the stage: Assessment of the Ask what s(he) knows or perceivespatient/family knowledge and Ask what s(he) wants to knowperception of disease treatment andprognosis

Discussion of medical issues Summarize current medical issues, includingcurrent diagnosis, treatments and prognosis

Assisting patient to identify personal Review what is important to patient e.g.,goals for end-of-life care comfort and pain control, going home, further

curative treatments, life at all costsAssist patient to decide which treatments are

advancing the goals of care and which areadding unnecessary burden

Address patient wishes for intensity ofintervention at EOL, i.e., DNR vs. other

Identify surrogate decision markerAssessment and management of Review of symptoms and probable etiologies

physical symptoms Assessment of symptom intensity and patientgoals for symptom relief

Assessment and subsequent reassessment ofcurrent treatment strategies

Recommendations for symptom managementAssessment and management of Assessment of the presence and intensity of

psychological, spiritual, and practical these and other issues; how they may affectneeds: fear of dying, anxiety about decision makingafterlife, denial of impending death, Development of intervention strategiesconcerns about family and finances, Help to normalize feelings, providepatient support systems, and search for information, encourage short-term goalmeaning setting

Facilitate family meetingsWork with other providers involved in the

patient’s careFinancial sources of support

Assessment of discharge planning What is expected prognosisissues: determining options for EOL Document patient/family goals of carecare and communicating that plan to What are patient’s symptom control needsother involved agencies and clinicians (assistance, technology, training)and other providers Discharge disposition

What level and kinds of support are availableoutside the hospital

Is a caregiver(s) present and what support isavailable to the caregiver

Financial sources of support

aAdapted from Wesisman.48

EOL, end of life; DNR, do not resuscitate.


Study outcomes and measures

The primary study outcomes were symptom con-trol, levels of emotional and spiritual support, patientsatisfaction, and total health services costs at 6 monthspostindex hospitalization. Secondary measures in-cluded survival, number of advance directives (ADs)at discharge, and hospice utilization within the 6months postindex hospitalization (hospitalization dur-ing which study enrollment occurred).

Surveys were administered to patients or proxies atstudy enrollment and within 2 weeks following indexhospitalization discharge to measure symptom controlas well as emotional and spiritual support. Patient sat-isfaction was also measured within 2 weeks of indexhospital discharge. Proxies were instructed to answerthe survey items as they thought the patient would.

Symptom severity was measured using the Physi-cal Area scale of the Modified City of Hope PatientQuestionnaires (MCOHPQ).51 The Physical Areascale addresses pain, fatigue, sleep changes, nausea,constipation, diarrhea, dry mouth, change in appetite,and shortness of breath. Higher scores indicatedgreater symptom severity.

Patients rated their emotional and spiritual supportusing items taken from the MCOHPQ Emotional/Re-lationship Area and Spiritual Area scales.51 Emotionalsupport items included: anxiety, burden to family, sup-port they received, isolation, opportunity to discuss ill-ness and possible death, and treatment wishes/goals.Higher scores indicated greater emotional burden.Spiritual support included: the importance of partici-pation in spiritual or religious experiences from theSpiritual Area scale, and two items developed by theinvestigators: ability to find meaning in one’s life, andsupport given by religion or spiritual belief. Higherscores reflected greater support.

The patient’s satisfaction with their inpatient expe-rience was measured by the MCOHPQ Place of CareEnvironment scale and the Doctors, Nurses/Other CareProviders Communication scale.51 The Place of CareEnvironment scale addressed experiences receivingpain management and symptom relief, psychologicaland social support, discharge planning, and end-of-lifeplanning. Higher values indicated more positive feel-ings. The Doctors, Nurses/Other Health Care Provid-ers Communication scale addressed the level of car-ing and respect a patient felt from their providers, aswell as the opportunity, ease, and the level of under-standing the patient had with their providers.

Higher scores represented greater caring, respectand understanding between patients and their provid-ers. A composite score for each scale was computedby summing the scores for all items in a scale and di-

viding the sum by the number of items completed.Cronbach �, a measure of internal consistency wascomputed for each scale. Cronbach � were: 0.66 forPhysical scale, 0.18 for Emotional/Relationship scale,0.65 for Spiritual scale, 0.65 for the Place of CareEnvironment scale, and 0.65 for the Doctors, Nurses/Other Health Care Providers Communication scale.These � indicate fair agreement among the individualitems for the Physical and Spiritual scales but a lackof agreement for the Emotional/Relationship scale.

Physical performance was measured using the East-ern Cooperative Oncology Group performance scale(ECOG).52 The total number of comorbidities, a mea-sure of disease burden, was obtained with the RxRiskscore program. This program uses a patient’s prior 12months of prescriptions to identify the presence of dis-tinct chronic diseases based on common medicationsprescribed for each chronic disease.53

Costs were computed for all health services usedwithin the 6 months following index hospitalizationdischarge. These services included emergency depart-ment, clinic, hospital outpatient, and home health vis-its, hospital readmissions, skilled nursing facility ad-missions, and pharmacy fills. Costs of health serviceswere assigned using the predetermined internal MCOrate structure and vendor contracts based on per diemand case rate calculations. ICU admission data wasonly available for the Denver and San Francisco sites.The cost of each palliative care team was computedbased on the total time for each team member multi-plied by the team member’s hourly wage and benefits.

Hospice measures included the number of patientsenrolled in hospice, the number of days from study en-rollment to hospice enrollment, and hospice length ofstay (LOS). All measures, including mortality, wereobtained from the MCO’s databases using standarddata extract protocols.

Statistical analyses

All analyses were performed using SAS 9.1 (SASInstitute Inc., Cary, NC). A p value � 0.05 was sig-nificant. Categorical variables were summarized aspercentages; continuous variables as means or medi-ans (for skewed data). Continuous measures for IPCSand UC patients were compared using t tests for nor-mally distributed measures and Wilcoxon two-sampletests for measures with skewed distributions. Cate-gorical measures were tested using �2 tests or Fisher’sexact test. All time to event measures (e.g., survival,days to hospice admission) were analyzed using Coxproportional hazard models.

Patients with life-liming illnesses often have phys-ical and cognitive limitations that necessitate the use

GADE ET AL.184

of proxies, which was the case in this study. We re-port the combined patient and proxy survey data herebecause analysis of the separate patterns of patient andproxy responses to the scales were similar.

Comparisons in total health costs between the IPCSand UC group used a non-linear model with a nega-tive binomial distribution and log link. Costs were nottransformed because the log link accounts for skeweddistributions. The model was adjusted for site, age,gender, and the number of days a patient could usemedical services. Costs are presented as total costs perpatient. IPCS team costs were included in the net costssavings.

RESULTS

The IPCS received 1168 referrals for study enroll-ment (Fig. 1). Five hundred fifty-one patients did not

meet inclusion criteria (cognitive impairment with nosurrogate, were currently enrolled in hospice or otherPC studies, or the attending did not approve study par-ticipation), were discharged or died prior to informedconsent, refused to participate, or were excluded forun-documented reasons (Fig. 1). We randomly as-signed 517 patients to IPCS (n � 280) or UC (n �237). Five IPCS patients withdrew prior to the initia-tion of IPCS services at the encouragement of a fam-ily member, resulting in 275 IPCS patients. No pa-tients were lost to follow-up.

Patient characteristics

Baseline characteristics are presented in Table 2.There were no differences in any baseline measuresbetween the IPCS and UC groups except for the life-limiting diagnoses of stroke and end-stage renal dis-ease (ESRD).

FIG. 1. Inpatient palliative care study patient enrollment.


Index hospitalization

Number of days from index hospital admission tostudy enrollment, days from enrollment to hospital dis-charge, and hospital LOS did not differ between theIPCS and UC patients (Table 3). There was no differ-ence in mean total costs between groups for their indexhospitalization (IPCS: $20,783; UC: $15,841, p � 0.08).

Hospice use

IPCS patients had significantly longer median hos-pice stays than UC participants (IPCS: 24 days; UC: 12days, p � 0.04; Table 3). The median days from studyenrollment to hospice admission was 1 day shorter forIPCS patients compared to UC patients but the differ-ence was not significant (p � 0.14). The percentage ofpatients admitted to hospice did not differ (p � 0.50).

Advance directives

While there was no difference in the number of ADsat study enrollment (Table 2), IPCS patients completedsignificantly more ADS at hospital discharge than UCpatients (91.1% vs. 77.8%; p � 0.001; Table 3).

Survival

There was no difference in survival between IPCSand UC. Median post enrollment survival was 30 daysfor IPCS and 36 days for UC (p � 0.08), and 173 IPCSpatients (63%) and 132 UC patients (56%) died dur-ing the study period (p � 0.08). Significantly moreIPCS patients (17.1%) died during their index hospi-talization compared to UC patients (8.0%; p � 0.002;Table 3).

Symptoms, emotional, spiritual support, and quality of life

IPCS and UC mean enrollment and discharge scoresfor the Physical, Emotional/Relationship, SpiritualArea composite scales as well as the Quality of Lifescale are shown in Table 4. There were no differencesbetween groups for any scale.

Satisfaction with hospital care and providers

The IPCS group reported higher mean satisfactionfor both the Place of Care Environment scale (IPCS:6.8; UC: 6.4, p � 001.) and the Doctors, Nurses/Other

TABLE 2. PATIENT CHARACTERISTICS AT STUDY ENROLLMENT

IPCS Usual careMeasure (n � 275) (n � 237) p value

Advance directives at study enrollment 158 (53.38) 138 (62.2) 0.53a

Age, mean (SD) 73.6 (12.6) 73.1 (13.2) 0.68b

Comorbidities at study enrollment, mean (SD) 3.2 (2.2) 3.5 (2.3) 0.11b

Composite physical area scale at study 5.2 (1.8) 5.1 (1.8) 0.72b

enrollment, mean (SD)Composite emotional/relationship area scale 6.3 (1.9) 6.2 (1.7) 0.67b

at enrollment, mean (SD)Composite spiritual area scale at enrollment, 6.8 (2.7) 6.5 (3.0) 0.27b

mean (SD)ECOG score, median (interquartile range) 2 (2,3) 2 (2,3) 0.68c

Quality of life, median (interquartile range) 4 (1,7) 4 (2,6) 0.93c

Female, Number, number (%) 162 (59) 121 (51) 0.07a

Life-limiting diagnosis, number (%)Cancer 64 (27.3) 95 (34.4) 0.09a

CHF 21 (8.9) 17 (6.2) 0.24a

MI 3 (1.3) 6 (2.2) 0.52a

Other heart disease 7 (3.0) 3 (1.1) 0.20a

COPD 31 (13.2) 35 (12.7) 0.86a

Other pulmonary disease 3 (1.3) 3 (1.1) 1.00a

ESRD 10 (4.3) 2 (0.7) 0.02a

Organ failure 29 (12.3) 28 (10.1) 0.48a

Stroke 20 (8.5) 10 (3.6) 0.02a

Dementia 8 (3.4) 13 (4.7) 0.51a

a�2 for proportions or Fisher’s exact test (for tables with uneven margins and/or cells within n � 5).bt test.cWilcoxon two-sample test.IPCS, inpatient palliative care service; SD, standard deviation; ECOG, Eastern Cooperative Oncology Group; CHF, conges-

tive hearty failure; COPD, chronic obstructive pulmonary disease; MI, myocardial infarction; ESRD, end-stage renal disease.

GADE ET AL.186

Health Care Providers Communication scale (IPCS:8.3; UC: 7.2, p � 0.001; Table 5).

Total health care expenditures

Total mean health costs for the IPCS group werelower by $6,766 per patient compared to UC patients(IPCS: $14,486; UC: $21,252, p � 0.001). After sub-tracting the cost of staffing the IPCS ($1,911 per pa-tient), the net savings was $4,855 per patient. Cost sav-ings were largely driven by a significant difference inhospital readmission costs (IPCS: $6,421 per patient ver-sus UC: $13,275 per patient, p � 0.009). There was no difference in the number of hospital readmis-sions but IPCS patients had significantly fewer ICU stayson readmission (IPCS: 12; UC: 21, p � 0.04; Table 6).

DISCUSSION

Key findings include greater IPCS patient satisfac-tion with hospital care and providers, longer hospice

length of stay, more advanced directives at index hos-pitalization discharge, no difference in overall sur-vival, reduced ICU admissions on subsequent hospi-talization, and lower total health costs.

We believe greater patient satisfaction was achieveddue to IPCS addressing the patient’s and family’s needfor information and facilitating their active participa-tion in decisions regarding their medical care. In-creased patient satisfaction has been reported from pre-vious research on palliative care interventions.28,29,43

We found no differences in physical symptomswhich is inconsistent with other studies on inpatientpalliative care interventions.23,38,42,43 In particular, wefound no differences in pain symptoms from study en-rollment to index hospitalization discharge. There areseveral possible explanations. First, patients in thisstudy reported relatively low physical symptoms atstudy enrollment. The mean pain rating on a scale of1 to 10 was 3.4 suggesting that pain was less than inother reported populations whose symptoms weremore severe.23,42 Second, the average index hospital-

TABLE 3. COMPARISONS FOR THE INDEX HOSPITALIZATION, ADVANCE DIRECTIVES, HOSPICE USE, AND SURVIVAL

IPCS Usual careMeasure (n � 275) (n � 237) p value

Admission to study enrollment (days), median 3 (2,7) 4 (2,7) 0.36a

(interquartile range)Study enrollment to discharge or death in the 3 (1,6) 2 (1,5) 0.10a

hospital (days), median (interquartile range)Index Hospital length of stay (days) median 7 (4,12) 7 (4,12) 0.57a

(interquartile range)Study enrollment to hospice admission (days), 2 (0,23) 3 (0,37) 0.09a

median (interquartile range)Survival from study enrollment (days), median 30 (6,104) 36 (13,106) 0.08a

(interquartile range)Survival from study enrollment for patients who 43 (17,134) 43.5 (16,117) 0.80a

did not die during index hospitalization, median(interquartile range)

Days to hospice, median (interquartile range) 2 (0,23) 3 (0,37) 0.14a

Hospice length of stay (days), median 24 (7,94) 12 (4,48) 0.04b

(interquartile range)Index Hospital length of stay (days) median 7 (4,12) 7 (4,12) 0.57b

(interquartile range)Died during index hospitalization, number (%) 47 (17.1) 19 (8.0) 0.002d

Advance directives at discharge, number (%)c 224 (91.1) 172 (77.8) � 0.001d

Died during study, number (%) 173 (62.9) 132 (55.7) 0.08d

Patients admitted to hospice, number (%) 103 (37.1) 96 (40.7) 0.50d

Total index hospitalization costs ($), mean (SD) 20,783 (40,088) 10,864 15,841 (18,959) 8,868 0.08e

median

aCox proportional hazards model.bWilcoxon two-sample test.c�2 test.dPatients with no advance directive at study enrollment: N: IPCS � 95, UC � 80. Not all subjects had a documented presence

or absence of an advance directive at study enrollment.eGeneralized linear model adjusted for age, gender, and study site.IPCS, inpatient palliative care service; SD, standard deviation; ECOG, Eastern Cooperative Oncology Group performance scale.


ization LOS after study enrollment was 4.9 days, ashorter time for the IPCS team to manage complexphysical symptoms compared to studies with longerinterventions.23,42,43 Finally our patient populationsurvived for a longer period of time indicating theymight be earlier in their disease state than other inpa-tient palliative care patients.34,58

There was no difference in the proportion of patientsenrolled in hospice, but IPCS patients had longer hos-pice stays. MCOs have higher rates of hospice utiliza-tion and longer hospice stays compared to fee for ser-vice.55 As all participants were MCO members, it ispossible that IPCS would not be able to increase an al-ready high hospice enrollment rate. Finally, patients andtheir families may not have considered hospice at theirindex hospitalization because this was not an option theyfelt necessary at this stage in the patient’s illness.

We were not surprised that we had significantlymore ADs at index hospital discharge because ADswere addressed with each intervention patient. In-creased ADs subsequent to palliative care interven-tions is consistent with the literature.27

There was no difference in the number of inpatientreadmissions between the IPCS and UC, but IPCS pa-tients had lower inpatient readmissions costs. Theselower readmission costs are partially explained byfewer ICU admissions. Reduced ICU admissions mayhave been due to more clearly defined patient goals ofcare and more effective communication of these goalsin the medical record and through advance directives.Other studies have found decreased ICU admissions.34

Overall survival between IPCS and UC patients didnot differ. However, more IPCS patients died duringtheir index hospitalization, which was attributed to a

TABLE 5. COMPOSITE SATISFACTION SCALE SCORES INDEX AT INDEX HOSPITALIZATION

DISCHARGE FOR COMBINED PATIENT AND PROXY RESPONSES

IPCS Usual care

Composite score Mean (SD) n Mean (SD) n p valuea

Place of care environment scaleb 6.8 (1.0) 156 6.4 (1.1) 139 � 0.001Doctors, nurses/other 8.0 (1.4) 185 7.4 (1.7) 156 � 0.001

health care providersCommunication scalec

aGeneralized linear model.b11-point scale: 0 � none at all, 10 � completely; higher score � greater positive feeling about care

environment.c11-point scale: 0 � not at all, 10 � a great deal; higher score � greater communication between patient

and providers.IPCS, inpatient palliative care service; UC, usual care; SD, standard deviation.

TABLE 4. COMPOSITE BURDEN SCALE SCORES AT STUDY ENROLLMENT AND INDEX

HOSPITALIZATION DISCHARGE FOR COMBINED PATIENT AND PROXY RESPONSES

IPCS Usual care

Study enrollment Hospital discharge Study enrollment Hospital dischargeComposite score Mean (SD) n Mean (SD) n Mean (SD) n Mean (SD) n p valuea

Physical area scaleb 5.2 (1.8) 240 4.0 (1.7) 186 5.1 (1.8) 204 4.1 (1.8) 188 0.91Emotional/relationship 6.3 (1.9) 243 7.0 (1.4) 184 6.2 (1.7) 206 6.7 (1.5) 177 0.07

area scalec

Spiritual area scaled 6.8 (2.7) 254 6.6 (2.5) 202 6.5 (3.0) 216 6.2 (2.6) 189 0.55Self-reported quality 4.1 (3.3) 266 6.4 (2.3) 199 4.1 (3.1) 227 6.3 (2.1) 191 0.78

of lifee

aGeneralized linear model with hospital discharge score as the independent variable and the study enrollment score as covari-ate.

b11-point scale: 0 � no problem, 10 � severe problem; higher score � greater physical discomfort.c11-point scale: 0 � none at all, 10 � completely; higher score � greater emotional burden.d11-point scale: 0 � not at all, 10 � a great deal; higher score � greater importance attached to spiritual aspects of one’s life.e11-point scale: 0 � very bad, 10 � excellent.IPCS, inpatient palliative care service; UC, usual care; SD, standard deviation.

GADE ET AL.188

difference at one site. IPCS patients at this site had amedian 3 day longer hospital stay than the UC group.This site’s team reported difficulty transitioning pa-tients to other care venues near the end of life. Therewas no difference in mortality between IPCS and UCpatient over a 14-day period postenrollment, whetheror not they were still hospitalized, indicating that over-all mortality was not different at that site.

The IPCS intervention did not vary among sites withrespect to the components or core features of the in-tervention. However, uniqueness in the hospital cul-ture, variability in palliative care staffing levels, pa-tient support available at discharge, individual teammembers’ palliative care experience, and the func-tionality and maturity of each team did vary betweensites as would be expected. Further study would beneeded to understand if any of these factors might af-fect patient outcomes.

Other areas that would benefit from future researchinclude which components of the palliative care inter-vention are most effective in achieving positive out-comes and how to apply the interdisciplinary pallia-tive care team in other care settings.

We identified two study limitations. One limitationof the study was the lack of some measurable processmeasures, e.g., what symptoms and issues were helpedby which components of the IPCS. A second limita-tion was participants in this study were members of ahealth plan with an integrated medical delivery systemwhich may limit generalization of study outcomes inother settings.

This study provides evidence for the positive im-pact of IPCS consultations on satisfaction with careand decreased health care costs. It also contributes newinformation on the impact of this service on ICU ad-missions and hospice utilization. Based on this data,all three sites are continuing to offer palliative care to hospitalized members. In addition, the integrated

health plan is implementing new IPCS programs na-tionally.

ACKNOWLEDGMENTS

The authors would like to thank the following: Proj-ect manager: Marlene McKenzie, R.N., M.S. Clinicalteam members: Rev. Sandy Berg, Sarah Carle M.S.W.,Timothy Collins, M.D., Laurence Connors, M.D.,Deacon Dominque Diprofio, Kathleen Moneymaker,R.N., Alan Rastrelli, M.D., Lisa Sharpe, B.S., KarenStiphout, R.N. Statistical advice: Stan Xu, Ph.D. Dataentry: Jannelle Briggs and Stan Chew. Medlinesearches: Margaret Bandy, M.L.S., Joyce E. Condon,M.L.S., and library staff at Exempla Saint Joseph Hos-pital, Denver, Colorado. We would like to thank anumber of earlier reviewers of the manuscript for theircomments and suggestions.

Study Funding: Garfield Memorial Fund.Clinical Trials Registration: ClinicalTrial.gov

NCT00325611.

ABSTRACTS

McGrady K, Connors L , Conner D, Rastrelli A, Richardson R,Beane J, Williams M, Collins T: Influence of an InpatientPalliative Care Team on Post-Hospital Discharge ServiceUtilization and Cost. American Academy of Hospice and Pal-liative Medicine Annual Meeting. New Orleans LA: January2005.

Gade G, Venohr I, Conner D: Symptom Management, Qualityof Life, Patient Satisfaction, and Utilization/Cost Outcomesfrom a RCT of an Inpatient Palliative Care Service. KaiserPermanente End-of-life Care Symposium. Berkeley, CA:March 2005.

McGrady K, Beane J: Outcomes of an Interdisciplinary Inpa-tient Palliative Care Service: A Randomized Controlled Trial.

TABLE 6. TOTAL HEALTH CARE COSTS PER PATIENT AND THE NUMBER

OF ICU ADMISSIONS FOR SIX MONTHS FOLLOWING INDEX HOSPITALIZATION

IPCS (n � 230) Usual care (n � 218)Mean

Median Median difference(interquartile (interquartile (usual care

Measure Mean (SD) range) Mean (SD) range) minus IPCS) p valuea

Total health care costs 14,486 (17,361) 2,202 (205–14,070) 21,252 (25,197) 3,429 (284–16,783) 6,766 0.001($)

ICU admissionsb 12 21 6,769 0.040(Number)

aNonlinear two-part model for cost; �2 for ICU admissions.bDenver and San Francisco only.ICU, intensive care unit; IPCS, inpatient palliative care service; SD, standard deviation.


National Hospice and Palliative Care Organization Manage-ment Conference. Hollywood FL: October 2005.

Conner D: Differences in survival, hospice admission, and hos-pice length of stay for patients randomized to either an inpa-tient palliative care team intervention or to usual care. Ameri-can Geriatrics Society Annual Meeting. Orlando FL: May 2005.

Conner D, McGrady K, Richardson R, Beane J: Predictors ofHospice Admission and Length of Stay from a RandomizedControl Trial of an Inpatient Palliative Care Service. Amer-ican Academy of Hospice and Palliative Medicine annualmeeting. Nashville, TN: February 2006.

McGrady K, Conner D, Richardson R, Beane J, Connors L,Rastrelli A, Collins T: Influence of an Inpatient PalliativeCare Team on Service Utilization and Costs. American Acad-emy of Hospice and Palliative Medicine Annual meeting.Nashville, TN: February 2006.

Conner D, McGrady K, Richardson R, Bean J, Venohr I, GadeG: Influence of an Inpatient Palliative Care Team on Post-Hospital Discharge Service Utilization and Cost. HMO Re-search Conference Annual Meeting. Boston, MA: May 2006.

Gade G, McGrady K, Beane J: Inpatient Palliative Care: A Ran-domized Trial. Kaiser Permanente National Geriatric and Pal-liative Care Conference. Anaheim, CA: November 2006.

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Address reprint requests to:Douglas Conner, Ph.D.Clinical Research Unit

Kaiser PermanentePO Box 378066

Denver, CO 80237-8066

E-mail: [email protected]

CLINICIAN’S CORNERPERSPECTIVES ON CAREAT THE CLOSE OF LIFE

Palliative Care for Patients With Headand Neck Cancer“I Would Like a Quick Return to a Normal Lifestyle”Nathan E. Goldstein, MDEric Genden, MDR. Sean Morrison, MD

THE PATIENT’S STORYMr K is a 57-year-old financial analyst with a long history ofprecancerous and cancerous oral lesions. Although his medi-cal history includes hypertension, diabetes mellitus, and HIVinfection (well controlled with antiretroviral treatments), hehas no risk factors for oral cancer, specifically no tobacco useor significant alcohol intake. In 1997, he developed a tonguelesion that demonstrated dysplasia. It was treated with topicalsteroids, and then both laser and surgical excision. The lesionrecurred in 1999 and a biopsy revealed superficially invasivewell-differentiatedsquamouscellcarcinoma.Heunderwentwideresectionwithallmarginsclearofcarcinoma,butwithresidualdysplasia at the edges.

He was followed up closely and in April 2006 began expe-riencing worsening tongue pain. Biopsy at this time showedrecurrence of his squamous cell carcinoma. He was then re-ferred to Dr U, who performed a right partial glossectomy andipsilateral neck dissection. Pathology from the tongue speci-menshowedcarcinomaextendingto the lateralmargin.At thispoint,mandibularresectionandreconstructionwithafreefibulaflapwasundertaken. Intraoperative frozensectionmarginsdidnot show evidence of cancer, but on final pathological exami-nation, however, there was extensive involvement of themandible to the lateralmargin.MrKwas takenback to theop-erating room for a third resection and reconstruction with asecond free fibula flap. After the operation, he underwent ra-diation therapy to theneck.Currently,3monthsaftercomple-tion of radiation therapy, he appears to be free of disease.

During his operations and radiation therapy, Mr K lostnearly 20 pounds. He remains dependent on liquid artificialhydration and nutrition, delivered through a gastrostomy tube.He has difficulty controlling his oral secretions. His speechis intelligible but significantly different from his former pat-

CME available online at www.jamaarchivescme.comand questions on p 1845.

Author Affiliations are listed at the end of this article.Corresponding Author: Nathan E. Goldstein, MD, Department of Geriatrics, Box1070, Mount Sinai School of Medicine, One Gustave Levy Place, New York, NY10029 ([email protected]).Perspectives on Care at the Close of Life is produced and edited at the Universityof California, San Francisco, by Stephen J. McPhee, MD, Michael W. Rabow, MD,and Steven Z. Pantilat, MD; Amy J. Markowitz, JD, is managing editor.Perspectives on Care at the Close of Life Section Editor: Margaret A. Winker, MD,Deputy Editor.

Head and neck cancers constitute a diverse group of dis-eases including malignancies of the oral cavity, orophar-ynx, larynx, sinuses, and skull base. Treatment of these can-cers includes a combination of surgical resection,chemotherapy, and radiation. Due to both the patterns ofdisease recurrence and the adverse effects of treatments,patients with head and neck cancer often have a complexand prolonged course of illness that is marked by periodsof freedom from disease and symptoms interspersed withbouts of serious illness, debility, and numerous physicaland psychological symptoms including pain, dysphagia,weight loss, disfigurement, depression, and xerostomia.Thus, management of this disease is best provided by aninterdisciplinary team that includes individuals from thedisciplines of otolaryngology, palliative care, radiation on-cology, oncology, nutrition, speech, and physical and oc-cupational therapy. Using the case of Mr K, we describethe symptoms encountered by patients with head and neckcancer and suggest options for management. We discussthe psychological aspects that affect these patients, in-cluding issues such as changes in body image, quality oflife, anxiety, and guilt. Finally, we discuss the importanceof the interdisciplinary team in the care of these patientsand outline the roles of each team member. By providingcomprehensive care to patients with malignancies of thehead and neck, clinicians can increase the likelihood thatpatients and their families will be able to obtain the bestpossible outcomes and quality of life.JAMA. 2008;299(15):1818-1825 www.jama.com

1818 JAMA, April 16, 2008—Vol 299, No. 15 (Reprinted) ©2008 American Medical Association. All rights reserved.

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tern. The significant pain he experienced from the radiationtherapy, including burns around the chin and neck, ulcerson his lips, and bleeding in his mouth, have all abated. Hehas returned to his work as a financial analyst part time andis able to live independently and support himself.

PERSPECTIVESMr K and Dr U were interviewed by a Perspectives editorin March 2007.

MR K: I had followed up with my surgeon’s associate onceor twice a year and was disappointed to find that the cancerhad returned last year. Over the years, once in a while, theyhad done biopsies, but they always came back negative; thistime it was positive. When I had the earlier surgery in 1999, itaffected my ability to speak and eat normally. I also had con-cerns about the pain involved in recovering from the surgery.

DR U: I think he’s had some of the typical problems and he’shad some of the more extreme problems along the continuum ofwhatpatientswithoralcancerdealwith.Oneof theprimaryprob-lems forpatientswithoral cancer ishighrecurrencerate. . . . Thispatienthasgone throughthat.He’shadmultipleoperations,whichI know have been very taxing on him emotionally. He’s sufferedall the sequelae that go along with surgery, primarily radiation,which seemed to be much harder on him than the surgery, whichis usual for the patients with oral cancer.

Palliative Care for Patients With Head and Neck Cancer

Palliativecare is interdisciplinarycare thatprovidessupport forthephysical,emotional,andpsychologicalsuffering1 ofpatientswith any advanced illness, regardless of age, diagnosis, or lifeexpectancy. The goal is to prevent and relieve suffering and toimprovequalityof life forpeople facingsevere,complexillness.It differs fromtraditionalhospiceorend-of-life care in thatpa-tients who receive palliative care can also continue to receivecurative or life-prolonging treatments. This distinction is par-ticularly important in the case of patients with head and neckcancersbecausethesepatientsoftenhavearelapsingcoursethatis marked by periods of freedom from disease and symptoms,interspersedwithboutsof serious illness,debility, andnumer-ousphysical andpsychological symptoms includingpain,dys-phagia,weight loss,disfigurement,depression,andxerostomia.Suggestions for treatmentof symptomsdiscussedhereincomefrom a comprehensive search of both PubMed and the Coch-rane Review databases.

Epidemiology of Head and Neck Cancer

Anestimated30 000peoplearediagnosedwithheadandneckcancersannually in theUnitedStates, andapproximately7500individuals die of these cancers annually.2,3 The phrase “headand neck cancer” refers to a diverse group of diseases that in-cludeprimarymalignanciesof theoral cavity,oropharynx, lar-ynx,sinuses,andskullbase.Thesemalignanciesprimarilyaffectmen(witharatioofnearly2:1)andarestronglyassociatedwithcigarettesmokingandalcoholconsumption.2,4-6 Therehasbeenincreasingevidence in the last severalyearsofanepidemiologi-

cal linkbetweenhumanpapillomavirusandheadandneckcan-cers, even in the absence of cigarette smoking or alcoholconsumption.7-9

Although treatment options for head and neck cancer haveevolved rapidly over the last 30 years, prognosis for patientswith locally advanced disease still remains poor.10,11 Five-year survival rates for patients with head and neck cancer (alltypes and stages combined) is 59%.3 The mainstay of currenttherapies involves a combination of surgery, radiation, and che-motherapy; the sequence and timing of these interventions de-pends on both origin of the malignancy as well as its stage.10

Although these treatmentmodalitieshave increased thedisease-free interval for patients with head and neck cancers, cure rateshave not dramatically changed over the last 50 years. In otherwords, while the cure rates have not improved, patients areliving longer with quiescent, subclinical disease.12 (A com-prehensive outline of interventions and survival rates basedon cancer type and stage is available elsewhere.13) As patientslive longer with the consequences of the disease and its treat-ment, primary care physicians need to be familiar with the com-mon adverse effects and ways to alleviate them.

PhysicalSymptomsinPatientsWithHeadandNeckCancer

DR U: I told him that there would be 2 kinds of restriction oforal function and [adverse]effects. There would be short-termeffects, from the healing of the surgery. There would be con-sequences of [his radiation therapy as well], most of which wouldbe temporary, primarily pain, mucositis, difficulty swallow-ing, loss of taste, and change of speech. He would also have somelong-term effects. Those would be a change in his speech pat-tern and, from the radiation therapy in particular, he wouldhave xerostomia because of the damage to the salivary glands.

MR K: Essentially the main drawbacks were the side effectsand the fact that I am still not eating very well. Most of mynutrition is taken through a tube. It affects me because I can’ttravel a very far distance [from home] without having to dealwith the tube feeding. It is cumbersome and somewhat messy.So, I don’t want to go too far.

Patientswithheadandneckcancercanhaveavarietyofphysi-cal symptoms, includingpain,xerostomia,mucositis,difficul-tieswithswallowing,andchangesinspeechandtaste(TABLE).24

These symptoms may result from the tumor, acute adverse ef-fects from treatments, or long-term sequelae of therapies.23

Pain

MR K: Radiation included rather unpleasant side effects. It’spainful and I got burns around my chin and neck. I had painmedication, and I put topical solutions on the areas of skin thatwere affected. I also had ulcers on my lips and yeast infectionsin my mouth. There was also bleeding in my mouth.

Although all patients with cancer may experience pain, in-dividuals with head and neck cancer often have etiologies andpathophysiologicalmechanisms forpain thatdiffer fromothermalignancies. Pain in the mouth or neck may be a presentingsymptom,29 and it also may be a marker of recurrence. Pain re-

PALLIATIVE CARE FOR PATIENTS WITH HEAD AND NECK CANCER

©2008 American Medical Association. All rights reserved. (Reprinted) JAMA, April 16, 2008—Vol 299, No. 15 1819


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sulting from the tumor itself can be nociceptive, related to de-struction of tissue such as the tongue or jaw, as well as neuro-pathic, related to tumor damaging or traveling along nerves.30

Although a discussion of treatment modalities for nociceptivevs neuropathic pain is beyond the scope of this article, distin-guishing between the 2 is vital because they are treated withdifferentmedicationsanddosingintervals.30,31 Nociceptivepainis treated with opioid medications, whereas neuropathic painisoften treatedwithanticonvulsants, tricyclicantidepressants,local anesthetics, andothermedications.32 Principles for treat-ing pain among patients with head and neck malignancies aresimilar to that of other cancers, but patients may be unable totakecertain formulationsofmedicationsduetodifficultyswal-lowing. Therefore, transdermal preparations for patients on astable dose of opioids (eg, fentanyl patches) or liquids that en-ableeasierdosingviagastrostomytubes (eg, liquidmorphine)may offer better options.14 Although medications used com-monly to treat neuropathic pain do not come in liquid prepa-rations,consultationwithapharmacist isbeneficialtodeterminewhich classes of medication can be crushed and either mixedwith food or given via gastrostomy tube. Dermatitis and softtissuedamageof the faceorneckareoftenseen inpatientswhoreceive radiation therapy. These symptoms begin 2 to 3 weeksafter initiationof radiation treatmentandcanbequite severe.17

Usuallybeginningwitherythema, thefieldexposedtoradiationmay become edematous and eventually blister, ulcerate, andslough. Acute radiation-induced changes begin to heal about2 weeks after the cessation of treatment. Patients whose scalpis includedinthe fieldofradiationshouldbe instructedtowashgently and use mild shampoos to help prevent skin reactions.

Topicalagentssuchaslow-potencysteroidcreams,topicalacid-containing creams (such as hyaluronic or ascorbic acid), andaloeverahavebeenstudiedforboththepreventionandtreatmentof acute radiation-induced skin reactions, but a systematic re-viewfoundnobenefit fromtheseagents.33 As such, clinical ex-periencesuggests that initialuseofaplain,nonscented, lanolin-free hydrophilic cream may be helpful for patients with skindiscomfort due to radiation, but these creams should be dis-continued if skin breakdown occurs.33 Itching resulting fromradiationmaybetreatedwith low-potency topical steroids,butcautioniswarrantedbecausetheseagentsmayleadtoskinthin-ning if used for a prolonged period. Severe pain resulting fromradiationmaybemanagedwithsystemicopioids ifnecessary.33

Long-term complications can occur within 2 to 4 months af-tercompletionoftreatmentandincludechangesinskintexture,fibrosis, and atrophy of soft tissues. Chronic pain in the radia-tion field can occur but is not common.22 Skin changes may bemoresevereifchemotherapyisaddedtothetreatmentregimen.10

Sialorrhea and Xerostomia

Problems with controlling and producing saliva are trouble-sometreatmentcomplicationsofheadandnecktumors.Indeed,Mr K reported drooling postoperatively due to the loss of thenormalarchitectureofhismouthcausedbyaresectionofapor-tionofhismandible.Even thoughthesehypersecretory symp-toms can sometimes be addressed solely by swallowing andspeechtechniques taughtbyaspeechpathologist,patientsmaybenefit from pharmacological treatment with anticholinergicmedications(eg,glycopyrrolate,hyoscyamine)todrysecretions.Inolderadults,cautioniswarrantedinusingthesemedications

Table. Common Symptoms Encountered in Patients With Head and Neck Cancer and Suggested Treatmentsa

Symptom Treatment NotesPain Opioids May need to be given via alternate route (eg, transdermal

fentanyl patches, morphine elixir via gastrostomy tube)14

Mucositis Allopurinol mouthwashGranulocyte-macrophage colony-stimulating factorImmunoglobulinsHuman placental extract

Evidence supporting use of these agents is weak15

Dysphagia Consultation with speech and language pathologist16

Artificial hydration and nutrition17Degree of dysphagia depends on origin of tumor and types

of treatments. May be transient or permanent, may besevere and lead to dehydration or malnutrition

Xerostomia Frequent intake of water, ice chips18

Use of sugarless candy or gum18

Artificial saliva18

Pilocarpine (starting dose 2.5 mg enterally3 times daily)19,20

Based on common practice, evidence is weak; should be leftto patient preference within boundaries of what isdeemed medically indicated (eg, avoid water if significantaspiration risk). Pilocarpine has multiple adverse effects,which may limit its use, particularly in elderly patients21

Change in speech Consultation with speech and language pathologist16,22

Adaptive devices (eg, amplifier)23Many patients can relearn speech so this symptom does not

always interfere with long-term function, but speech maynot return to baseline patterns23

Decreased quality of life Supportive treatments, including counselingand psychotherapy

In many patients, quality of life will return to baseline levelover the long term24-26

Depression Emotional supportReferral to psychotherapy, counselingAntidepressant medications27

May be transient or prolonged; if patients are treated withantidepressants, adverse effects and interactions withother medications should be considered when selectingthe medications

Anxiety Emotional supportReferral to psychotherapy, counseling28

Anxiolytics

Anxiolytics can be associated with fatigue, delirium

aConsultation with speech and language pathologist is useful for many of these conditions as well.




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due to their multifaceted adverse effects profile (eg, orthosta-sis, constipation,urinary retention)andtheirpropensity to in-duce delirium.21

AsDrUmentioned,xerostomiaisalsoacomplicationofthesemalignancies, particularly in patients who undergo radiationtherapy.Theadditionofchemotherapytoradiotherapyfurtherincreases the likelihood of developing xerostomia.34 Saliva isnecessary for speech and eating, and it also serves to clean themouth and reduce cavities. As such, the loss of saliva produc-tion can lead to difficulty eating and swallowing, trouble withspeech,developmentofdental caries, anddecreasedqualityoflife.19Becausetheradiationtherapydestroystheglandsthatmakesaliva, higher doses are associated with more severe changes,which may be irreversible.35 Commonly used palliation forxerostomiaincludesdrinkingwaterfrequentlytokeepthemouthlubricated,useof icechips,andartificialsaliva,whichcombineswater with lubricants.18 Sucking on sugarless candy or chew-inggumcanalso stimulate salivary flow.18 Pilocarpine, startedat a dose of 2.5 mg by mouth 3 times daily that can be titratedupto10mg3timesaday, isaparasympathomimeticcompoundthat has been shown to improve patients’ symptoms to a cer-tain extent,19,20 but its adverse effect profile (eg, sweating, rhi-norrhea, urinary frequency) may limit its use.36

Mucositis

Mucositis is an inflammation of the mucosal membranes lin-ing the gastrointestinal tract and frequently affects the mouthand pharynx of patients with head and neck cancer who un-dergo radiation therapy.37 As with xerostomia, the prevalenceincreases with the addition of chemotherapy.34 Mucositis canbe extremely painful and result in the inability to eat, swal-low, or speak. The discomfort can be so significant that it in-terrupts treatment plans.38 This condition can occur in eitherthe mouth or pharynx and typically begins about 10 to 14days after the commencement of radiation treatment (whichis the length of time needed for the oral mucosa to regener-ate, aprocess impededbyradiotherapy).23 Theconditionusu-ally begins to abate 4 to 6 weeks after the completion of ra-diation.17 Clinically, themucosal tissuemayappearwhite andpatchyat firstandthenmayprogress toerythemaand,at times,ulcer formation. Mucositis can be exacerbated by superin-fection by either Candida or oral bacterial flora. Numerousagents have been used in attempts to either prevent, reducethe severityof, or treatmucositis.15,39,40 These range fromnon-pharmacological treatmentssuchastheuseof icechips,honey,and meticulous oral hygiene to local treatments (eg, topicallidocaine, sucralfate, “magic mouthwash” — a combinationthat varies by institution but often contains viscous lidocaine,diphenhydramine, and aluminum hydroxide41) to systemictreatments (eg, etoposide, granulocyte-macrophage colony-stimulating factor [GM-CSF]).Unfortunately, thedata tosup-port the use of many of these agents come from poorly de-signed studies whose results are often equivocal. In a recentcomprehensive meta-analysis of agents to prevent or reducethe severity of mucositis, the Cochrane Collaboration deter-

mined that only 2 interventions showed promise in patientswith head and neck cancer: amifostine (a free radical scav-enger dosed at 200 mg/m2 and given intravenously before ra-diation treatment42-44) and hydrolytic enzymes.40 In terms oftreatingmucositis, adifferentmeta-analysisby thesamegroupshowed that 4 agents were statistically beneficial for the treat-ment of mucositis: allopurinol mouthwash, GM-CSF, immu-noglobulins, andhumanplacental extract.15 However, inbothpreventionand treatment trials, theeffect size for theseagentsisquitesmallandproblemswithstudydesignoftenmaketheseconclusions unreliable.15,40 Systemic opioids (given orally, in-travenously,or transdermally)effectively treat thepainofmu-cositis15 and should be used aggressively if local treatmentsdo not result in desired pain relief. Patients with severe mu-cositis need to be closely monitored to prevent malnutritionor dehydration and may require hospitalization if severe painor dehydration requires intravenous medications or fluids.

Dysphagia and Odynophagia

Difficulties with swallowing are almost universal symptomsfor patients with head and neck cancer and may stem from theprimary tumor or develop as a sequelae of surgery or radia-tion. Swallowing difficulties can take the form of either dys-phagiaorodynophagia.Artificialhydrationandnutrition,mostoftendelivered throughagastrostomytube, is commonlyusedin patients as a temporary mechanism to ensure adequatenutrition and hydration during the healing process.17 Unlikepatients with other forms of advanced disease for whom datademonstrate that artificial hydration and nutrition is not ben-eficial and may even be harmful,45-47 there is less controversyabout the benefit of artificial hydration and nutrition in thispopulation. Mr K’s concerns about his inability to travel whileusing gastric feeding are common. Delivering larger quanti-tiesofartificialhydrationandnutritioninashortperiodof timeatregularintervals(bolusfeeding)canhelpliberatethesepatientsfrom the use of a pump and the need to be attached to exter-nal encumbrances. Consultation with a nutritionist is essen-tial to ensure that patients receive adequate intake of calories,protein,andwater. Inthosepatientswithadvanceddiseasewhorequire large-scale resectionsorpermanent tracheostomy, theneed for artificial nutrition may be lifelong. In addition to ad-dressing swallowing difficulties, artificial nutrition may beneeded to supplement caloric intake for patients who expe-rience severe anorexia due to alterations in smell or taste. Sys-temicopioidsmayalsobeeffectiveforthosepatientswithseverepain that restricts their ability to swallow.

Difficulties With Speech

Depending on the nature of a patient’s cancer and the surgicalproceduresnecessary to treat it, changes inspeechmaybetran-sient or permanent. Alterations to the lips, tongue, teeth, hardor soft palate, and larynx can all result in different patterns ofspeech or voice disorders.23 In the case of Mr K, although hisvoice will never return to its preoperative character and qual-ity, he is able to speak without the use of an assistive device.




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Forpatientswithmoreadvanceddiseaseorwhorequire laryn-geal resection, amplifying devices or alternate speaking tech-niques (eg, tracheoesophageal speech) must be used.23 Closecollaborationwithspeechand languagepathologistswhospe-cialize in the care of patients with head and neck malignanciesshould begin early in the course of a patient’s treatment.22

Psychological Symptoms in PatientsWith Head and Neck Cancer

DR U: One of the primary problems for patients with oral can-cer is the high recurrence rate. This patient has gone throughthat. He’s had multiple operations, which I know have been verytaxing on him emotionally. . . . Having said that, he has beensurprisingly good at getting back to normal life. . . . His part-ner has been extremely supportive and helped him throughtherapy and the difficult decisions. . . . I think that the supporthe has gotten from his partner has improved his quality of life.

MR K: Having cancer can be very depressing. I can’t say thatI had severe depression, but I did have some intermittent boutsof depression. . . . While it is comforting that the cancer has beenremoved and the radiation will try to prevent the return, I wouldlike a quick return to a normal lifestyle. I would very much liketo eat real food again and converse as normally as possible.

Body Image and Functional Outcomes

Although physical symptoms must be considered in thecare of patients with head and neck malignancies, the con-stellation of these symptoms and their impact on patients’body image and overall quality of life are equally importantto consider. Mr K sums up well the frustrations experi-enced by this group of patients. Although cure is possiblefor many, patients encounter numerous setbacks whileundergoing the procedures and healing necessary alongthe road to recovery. Changes in body appearance—andbody image—are almost universal. Since the 1980s, whensurgeons began to consider aesthetics and function aswell as treatment, reconstructive procedures have improveddramatically, due in part to collaboration between otolaryn-gologists and plastic surgeons. Patients who undergosurgery by a skilled surgical team may be left with littleto no outward physical changes.48 The introduction ofmicrovascular-free tissue transfer, a technique that transfersskin, muscle, bone, or all 3 from one part of the body to theneck for reconstruction of the tongue, jaw, and face, pro-vided surgeons with the means to improve a patient’s qual-ity of life by improving both functional and cosmetic out-comes.48 More recently, the application of robotic surgeryand endoscopic techniques allows the resection of tumorswithout the deforming facial incision used previously.These new techniques have been developed in the past sev-eral decades,49 but few data on their impact on patients’quality of life and functional outcomes are available. How-ever, pending such data, patients should be encouraged toseek out medical centers that practice such procedures tomaintian cosmetics and function.

Quality of Life and DepressionBecausepatientssee themselveseveryday inthemirrorandtheface isakeyelement in thewayweexpressourselves to theout-sideworld, evensmall alterations invisagecanhavea largead-verse impact on patients’ body image and self-esteem.50 Like-wise, because of difficulties with swallowing and nutrition aswellas thecachexiathat isassociatedwithcancer, thesepatientsmay loseagreatdealofweight.Dueto thesechanges inappear-anceandtheimpactthatboththemalignancyandits treatmentshaveonphysical functioningandself-image,patientswithheadandneckcancermayexperienceasignificantlyworsenedqual-ity of life. Long-term studies of these patients, however, showthat after a period of 12 to 36 months, self-rated quality of lifemayreturntobaseline inmore than50%ofpatients.Apatient’sbest achievable quality of life is dependent on factors such ascurrent pathology, stage at diagnosis, and surgical or medicalinterventions used.24-26 In spite of this eventual return to sat-isfaction with their quality of life, the period from diagnosis tofull recoverymaybemarkedbysymptomsof frustration,hope-lessness,anddepression.51 Studieshaveshownthat20%to50%of patients with head and neck cancers may have moderate tosevere depression at some point after diagnosis.52-54 Whetherthese symptoms are a true episode of major depression or anadjustment reaction with depressive features,55 the use of an-tidepressantmedicationsoftenhelpspatientswithheadandneckcancers.27 Choice of specific medications (eg, selective seroto-nin reuptake inhibitors [SSRIs] vs norepinephrine and dopa-mine reuptake inhibitors) should be guided by patients’ otherphysical symptomsandthemedication’s adverseeffectprofile.For example, patients with weight loss may benefit from thetetracyclic antidepressantmirtazapine,whichhasbeenshowntocauseweightgain insomepatients,56,57 andpatientswithxe-rostomiashouldnotreceivetricyclicantidepressantsduetotheiranticholinergic properties.

Anxiety

In addition to depression, the high recurrence rate of head andneck cancers may result in a constant sense of anxiety relat-ing to concerns about relapse. Mr K has lived with his cancerfor over a decade, a not-uncommon scenario for patients withhead and neck malignancies. The anxiety caused by this un-certainty can be particularly pervasive, affecting patients andtheir families in multiple areas of function.58-60 Psycho-therapy and support groups may be beneficial to patients withhead and neck malignancies and their families.28 If this anxi-ety impairs function or quality of life, treatment of anxiety withmedications such as benzodiazepines or SSRIs may be indi-cated. By asking patients about their concern of recurrence,clinicians can begin a discussion that allows patients to talkabout their fears while at the same time offering therapeuticoptions. To begin such a conversation, a clinician may say,“Do you worry that every pain or discomfort means that thecancer is back?” or “Some patients find that speaking with otherindividuals with head and neck cancer can be helpful. Wouldyou like me to provide you information on support groups?”




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Guilt and Self-blameFor decades the epidemiological links between head and neckcancers andboth tobaccoandalcohol consumptionhavebeenwell established4-6 andare thought tobemediated through thecreation of oncogenes and ultimately tumor formation.61 Al-thoughsomepatientsmayblamethemselvesandfeeltheycausedtheirownillness,62 patientsmayalsofeelguiltabout thetoll thatthe illness takes on their family and caregivers. Eating is a ma-jor social, cultural, and religious ritual in society, and patientswith head and neck cancer often cannot participate in this ac-tivity.Evengoingout todinnercanbecomeanimpossible task,andpatientsmayoftenbeconcernedabout the impact thishason their family. Likewise, facial disfigurement—even if onlytemporary—may make it emotionally difficult for patients toleave the house, which can change the dynamic between pa-tients and their loved ones. Feelings of guilt and self-blame inpatients with head and neck cancer are therefore not only re-lated to their own role in their illness but also to the belief thatthey are to blame for the impact the illness has on the qualityof life of their loved ones. Physicians can assist patients withthesefeelingsbyencouragingthemtotalkaboutthemwiththeirloved ones, and even facilitating these conversations. For ex-ample, if a patient is accompanied to an office visit with a care-giver, the clinician can ask both of them, “What role has theillness takenonyourrelationship?”orevenmoredirectly, “Areyou finding it difficult to eat out in public? How are you han-dling the changes imposed by the cancer on your social life orreligious practices?”

Interdisciplinary and Supportive Services for PatientsWith Head and Neck Cancer

DR U: The other thing that I have found helpful is using staff likethe speech, physical, and occupational therapists. The surgeonsimply cannot do all of those jobs and does not have the expertiseto do those jobs. So I try to get [all of these disciplines] involvedvery early.

MR K: [Oral communication] is a significant issue . . . I man-age a group of employees and some of my employees are not co-located with me, so I have to talk to them by phone. Some of thisis alleviated by modern communication and I can communicatewith them by e-mail, for example. I am going to a speech and swal-lowing therapist. She’s given me certain exercises for my mouth,tongue, head, and neck. She gave me exercises to read aloud. I’msupposed to focus on pronouncing words and emphasizing cer-tain syllables. She actually records video of my swallowing tech-nique. I’m not sure what the device is called, but she runs a tubethrough my nose and down into my throat and records a video ofhow the swallowing looks. By studying that, she can then giveme pointers as to how to improve my swallowing.

One of the fundamental principles of palliative care is thatit ispracticedwithinan interdisciplinary team,pooling theex-pertise of physicians, nurses, social workers, and chaplains toprovide the best quality of care for patients and their families.1

For patients with head and neck cancer, this approach is key,but many other disciplines must be included to ensure opti-

mal treatment and recovery for these patients.13,63,64 Althoughthere is evidence that multidisciplinary palliative care teamsimprove outcomes for patients,65,66 no studies to date have ex-amined their advantages in patients with head and neck can-cers. In addition to otolaryngologist–head and neck surgeonsandoncologistsandradiationoncologistscompletingtreatment,several other professionals play important roles. Dentists maycreateprosthesesfortheteethorjawif theseareresected.Speechandlanguagepathologistsprovidevoicerehabilitation, includ-ing acoustic assistive devices, and teach patients modifiedswallowing techniques. They also work with families in mealpreparation and in helping them to understand the effects ofthediseaseandtreatment.Physical therapistsandoccupationaltherapistshelppatients adapt to reconstructiveprocedures in-volving the use of flaps. Clinical social workers can help coor-dinatecareacross settings,nutritionistshelpassistpatientsob-tain adequate nutriton and hydration, and ophthalmologistsor neurosurgeons may be involved depending on the locationof the cancer.

Early and regular contact between these members of the teamis essential to ensure optimal care for patients with these ma-lignancies. At our medical center, weekly meetings of the Mul-tidisciplinary Program for Treatment of Diseases of the Headand Neck include otolaryngologists, oncologists, radiation on-cologists, speech pathologists, social workers, and palliativecare clinicians who discuss each patient who is to be admit-ted to the hospital to clarify the treatment plan and deter-mine which services an individual patient will need. The pal-liative care nurse practitioners follow up ambulatory patientsin the head and neck clinic to assess symptoms and help co-ordinate care. This approach to care improves patient satis-faction and ensures safe and efficient transitions across caresettings, a key quality indicator for the health care of patientswith complex disease.64,67,68 In addition, integrating palliativecare into the care plan at an earlier point in the course of thepatient’s disease process may help to reinforce, for both pa-tients and clinicians, the idea that palliative care is not the sameas end-of-life care.69,70 (For more information about staffingor sustaining a successful palliative care program, includingsolutions to common administrative and financial difficul-ties, go to http://www.capc.org.)

The team approach to care begins prior to surgery whena nutritionist and speech therapist provide patients with aseries of pretreatment exercises that may improve swallow-ing and speech following surgery. Preoperative integratedcare may also help patients develop expectations and re-duce feelings of anxiety and helplessness.16

Theinterdisciplinaryteamalsoprovidessupport forpatientsand their families, as well as promotes self-care and relievingstress and burnout among clinicians caring for these patientswith serious illness.71 Studies have shown that caring for pa-tientswithseriousillnesstakesatollonthehealthofcaregivers,72-74

and the high recurrence rate, along with high symptom bur-denandphysical changescausedbyheadandneckcancerandits treatments, create serial challenges for caregivers.75,76




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Care of the Dying Patient With Head and Neck CancerBecause of the unique nature of malignancies of the head andneck, special consideration must be given to end-of-life carefor these patients. As with all cancer patients, predicting whenan individual is near the end of life can be difficult. Signs in-clude being bed-bound, semicomatose, only able to take sipsof fluid, andan inability to takeoralmedicationsor toleratear-tificial hydration and nutrition.77 At this point, clear commu-nication with patients (when possible) and families is impor-tant so they understand that the patient has begun to enter thelast phase of life. Referral to an inpatient palliative care unit orhome hospice program should be considered to ensure excel-lentmanagementofsymptomsandtoprovidetheneededemo-tional and psychological support.78 Although artificial hydra-tion and nutrition plays a role for patients earlier in the courseof theirdisease, itmaybecomeburdensomenear theendof lifeand lead to edema, nausea and vomiting, and pulmonary con-gestion. Thus, it may make patients more uncomfortable andserve to only prolong the dying process.79-81 As such, familiesshould be educated about how this once beneficial treatmentmaynowbeasourceofsufferingandstoppingit shouldbecon-sidered.Anothermanagement issue formanypatientswithad-vanced head and neck cancer is the “carotid blowout”syndrome—a process by which the cancer erodes into the ca-rotidartery(orothergreatvessel in theneck) leading toexsan-guination. This process may take place gradually, with occultblood loss into the surrounding tissues, orwith rapid,massivebloodlossfromtheneck.Althoughtheprevalenceofthisdreadedcomplication is much rarer than in the past due to palliativesurgical techniques,82 it canbe frightening tobothpatientsandtheir families.Patientswithimpendingblowoutshouldbeman-aged in an inpatient setting, especially if children are presentin the home. However, caregivers who understand the natureofthiscomplicationandwishtohavethepatientremainathome,asapractical issue, shouldkeepdark towels (redorblack)nearthepatient’s bedside toabsorb the significant amountofbloodthat may be lost.

CONCLUSIONPalliative care is essential to the care of patients with headand neck cancer. These patients have unique physical symp-toms and emotional needs relating to both the disease andits treatments. Including palliative care clinicians on the treat-ing interdisciplinary team is a key element to improve carefor patients with head and neck cancers, as well as for theirfamily caregivers. As Mr K expressed, returning to a nor-mal lifestyle is a goal patients and their families strive forand requires the expertise of a range of specialists to re-sume their lifestyle as much as possible. Ensuring that thesepatients—and their families—receive comprehensive sup-portive services can increase the likelihood that patients willbe able to complete life-sustaining treatments and thus ob-tain the best possible outcomes and quality of life.

Author Affiliations: Hertzberg Palliative Care Institute of the Brookdale Depart-ment of Geriatrics and Adult Development (Drs Goldstein and Morrison) and De-

partment of Otolaryngology (Dr Genden), Mount Sinai School of Medicine, NewYork, and the James J. Peters VA Medical Center, Bronx, New York (Drs Goldsteinand Morrison).Financial Disclosures: None reported.Funding/Support: Dr Goldstein is supported by grant K23AG025933, a MentoredPatient-Oriented Research Career Development Award from the National Instituteon Aging. Dr Morrison is supported by the National Palliative Care Leadership Cen-ter and by grant K24AG22345 from the National Palliative Care Research Center andby a Midcareer Investigator Award in Patient-Oriented Research from the NationalInstitute on Aging. The Perspectives on Care at the Close of Life series is supportedby a grant from the Archstone Foundation.Role of the sponsor: The funding organizations had no role in the preparation,review, or approval of the manuscript.Other Sources: For a list of relevant Web sites, see the article on the JAMA Website at http://www.jama.com.

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WEB-ONLY CONTENT

Web Resources for Palliative Carefor Patients With Head and Neck CancerCENTER TO ADVANCEPALLIATIVE CAREhttp://www.capc.org

The Center to Advance PalliativeCare (CAPC) provides health care pro-fessionals with the tools, training, andtechnical assistance necessary to startand sustain successful palliative careprograms in hospitals and other healthcare settings. Web resources include so-lutions to common administrative andfinancial difficulties encountered whencreating and developing palliative careprograms. A national organization,CAPC is dedicated to increasing theavailability of quality palliative care ser-vices for people facing serious illness.

GET PALLIATIVE CAREhttp://www.getpalliativecare.org

This Web site for patients and fami-lies explains palliative care and how itdiffers from end-of-life care and hos-pice. Particularly useful in the case ofpatients with head and neck malignan-cies, the site emphasizes the impor-tance of supportive care along the roadto recovery.

NATIONAL CANCER INSTITUTEPAGEFORINFORMATIONABOUTHEAD AND NECK CANCERhttp://www.cancer.gov/cancertopics/types/head-and-neck

Maintained by the National CancerInstitute, this page provides informa-tion about head and neck cancers, in-cluding information about diagnosis,treatment, and clinical trials.

NATIONAL COMPREHENSIVECANCER NETWORKhttp://www.nccn.org

This Web site provides guidelines fortreatment of malignancies using theconsensus process of national expertsand review of relevant evidence fromclinical trials. Specific information re-lating to malignancies of the head andneck can be found at http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

ORAL CANCER FOUNDATIONhttp://www.oralcancerfoundation.org

A national public service, this non-profit entity is designed for preven-tion, education, research, advocacy, and

support activities. It provides a patient-survivor forum that is open to the pub-lic where those currently fighting oralcancer can gain insights and support.This was founded by an oral cancer sur-vivor. This site is recommended by theNational Comprehensive Cancer Net-work and is supported by numerouspharmaceutical companies, includingBristol-Myers Squibb, Johnson &Johnson, Abbott, Introgen, and Colgate-Palmolive.

SUPPORT FOR PEOPLEWITH ORAL AND HEADAND NECK CANCERhttp://www.spohnc.org

This Web site for patients was cre-ated by a patient with head and neckcancer. It includes general informa-tion, information about treatments, andlinks to support groups across the coun-try. This site is recommended by theNational Comprehensive Cancer Net-work and is supported by numerouspharmaceutical companies, includingALIGN, AstraZeneca, Bristol-MyersSquibb, ImClone, Laclede, and Sanofi-Aventis.

©2008 American Medical Association. All rights reserved. (Reprinted) JAMA, April 16, 2008—Vol 299, No. 15 E1


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