Medical Interventions at the End of Life

Life Sustaining Treatment and Other Decisions

December 12, 2013

George J. Giokas, MD Director for Palliative Care, The Community Hospice

ggiokas@communityhospice.org

Topics we’ll cover

Trends in End of Life CarePrognostication Communication & Establishing goals of care

Core Comfort Medicines Noisy Respiratory Secretions – Death Rattle Artificial Nutrition and Hydration

Implantable Cardiac Electronic Devices

The presenter has no relevant financial disclosures

Learning Objectives

At the completion of this webinar the learner will be:1.Able to describe the paradigm of benefit, effectiveness, and burden of interventions2.Aware of specialty societies’ recommendations on the use of feeding tubes in patients with advanced dementia3. Able to identify palliative and hospice issues in the care of patients with implantable cardiovascular devices.

A too-common scenario

Frail, multiply ill patient

Stressed caregiving system Limited social and medical support at “home”

“Predictable crises at unpredictable times” CAPC 2013

ED utilization ---- Hospitalization ---- ICU

Crisis Hospice Referral

(hospice use at least 1 month before death)

20% of ALL deaths in the US occur in the ICU or shortly after an ICU stay

Angus CritCareMed 2004

Increase in ICU utilization prior to death 2000-2009 40% of COPD pts in ICU w/in 1 month of death 22% of dementia patients in ICU “ “ 40% of patients referred to Hospice w/in 3 days of death had ICU stay that preceded referral

Teno JAMA 2013

% of Medicare Patients with ICU Stay During Terminal Hospitalization 2007

2010 2003-07

Dying in Hospital 25% 29% Enrolled in Hospice last month of life 61% 55%

Seeing 10 or more MDs last 6 months 58% 46% ICU Admission last month of life 29% 24% Hospice Referral last 3 days of life 11% 8% Chemo last 2 weeks of life 6% 6% LST (vent, FT, CPR) last month of life 9% 9%

Medicare patients; Analyses controlled for pt age, sex, race, tumor type and non-cancer chronic conditions

Sept 2013

US Adults sampled1900 interviews

Landlines and cell phonesEnglish and Spanish speaking staff

http://www.pewforum.org/2013/11/21/views-on-end-of-life-medical-treatments/

End of Life Treatment Challenges

The “conversation” has frequently not occurred

Medical Momentum (Default) to Do Something

Diagnostic UncertaintyIs this patient actively dying??Multi-factorial: - Underlying disease (s) - complications

treatments/medications

Burden of diagnostic and treatment interventions

Focus of care patient …family ..care professionals

“You got to be very careful if you don’t know where you’re going, because you might not get there.”

Yoggi Berra

PrognosticationMDs tend to overestimate; especially if close relationship (N

Christakos)

Clinical Predictive Rules – Walther (hospitalized patients), Mitchell (NH Dementia), Charlson (ESRD), Palliative Prognostic

Index e-prognosis.org

Estimates of mortality in a population of patients

Cancer patients …In later stages patient-specific characteristics are more important than tumor-related factors Glare et al JPM 2008

Common factorsperformance status, advanced age,

malnutrition, comorbid illness, increasing organ dysfunction,

hospitalization for acute decompensation (Salpeter,AJM 2011)

“Would I be surprised if this patient died in the next year”

The wavering and uncertain course for COPD/CHF may explain the frequency of intensive interventions compared to cancer dx’s

(Weissman)

Lunney, Lynn, & Hogan as cited CanMedAssocJrnl Aug 2013

Advanced Dementia 22 Boston NHsMitchell, Teno NEJM Oct 2009

2003 – 2007 300 residents mean age 85

Mean survival was 1.3 years risk of death within 6 months was 25%

Pneumonia 6 month mortality 46.7%

Febrile episode 6 month mortality 44.5%

Eating problem 6 month mortality 38.6%

Mitchell et al JAMA 2004

Prognostication Support Study

6 month median survival estimateday prior to death lung cancer 0 % 5 of 7 days before death for COPD 40 %

Survival to hospital discharge if mech ventilated

lung cancer 38%COPD 76%

Claessens, et al J AM Geriatr Soc 2000 Fried, et al JAMA Sept 2012

Communication Pearls

• Assess the patient’s preferences for communication • Ask permission Start with the patient’s agenda• Give information in small-chunks Ask-Tell-Ask• Track both the emotion and the cognitive data you get

from the patient• Attend to emotion before giving cognitive information • Articulate empathy explicitly• Stay with the patient and move the conversation

forward one step at a time• Less is More

James Tulsky, MD Duke Univ. Palliative Care

Communicating PrognosisPatient’s Informational Style

ready to hear this? accompanied by anyone? cultural

Communicate as ballpark rough estimate ranges days to weeks weeks to

months

Any occasions/goals important to patient?

Address Emotion with empathic responses

Address function, care needs, location of care

Benefit the patient’s assessment of the value of the

treatment’s result

Effectiveness the physician’s determination of the capacity of the treatment to alter the natural history of the of the

disease

Burden the cost, discomfort, and inconvenience of the

treatment physician and patient

E Pellegrino JAMA 2/23/2000

Decision Domains

“What Bothers You Most?”Univ of Rochester MC Palliative Care Service

44% Physical Distresspain, dyspnea, anorexia, paresthesias

16% Emotional, spiritual, existential, nonspecific distress depression, hopelessness, frustration, loneliness “What’s the point of all this?

15 % Interpersonal Relationshipsburden to family; Missing family activities, milestonesFamily would have to make difficult decisions

Shah, et al, American Journal of Hospice Palliative Medicine, April/May 2008

“What Bothers You Most?”15% Dying process “Just want to get this over with”

Fear of future physical sufferingSense of not having enough time to do important things

12% Loss of function and normalcyInability to eat and other bodily functionsImpossible to continue with work

11% Concern regarding locationNot being home Being unable to leave hospital

9% Distress over medical providers or treatment“All these different doctors”Med side effect “I don’t like being sleepy”

ICU Families’ Difficult Decisions

Tensions

Responsibility for the loved one’s death

A chance of recovery

Family well-being

Coping

Recalling prior discussions

Sharing decisions with family

Delay/defer decisions

Spiritual/religious practices

Story-tellingSchenker, et al. J Gen Int Med 2012

What helps surrogates?

Recognize the stress surrogates experienceNormalize their stressFacilitate discussions between family members with differing viewsAllow time for decisionsFamily meeting roomsTime limited trials

Vig, et al Jrnl Pain and Symp Management Nov 2011Schenker et al J Gen Int Med 2012

What helps surrogates?

Avoid different information from multiple clinicians

Receiving recommendations from clinicians

Telling them they made the right decision afterwards

Vig, et al Jrnl Pain and Symp Management Nov 2011Schenker et al J Gen Int Med 20121

“They’re in DENIAL”Too overwhelmed, exhausted to understand

Lack of trust Protecting family – cultural normsUndertreated anxiety or depression delirium

Patients may not understand the prognostic information, Language or cultural barriers

Patients may be confused by differing estimates of prognosis Given mixed messages Clinician back-pedals when we’re uncomfortable

Denial may be healthy coping

Jacobsen, et al Jrnl Pal Med Jan 2013

Quill, Annals of Internal Medicine, 2009

“Do EVERYTHING”

Do EVERYTHING!Acknowledge and follow the patient’s treatment philosophy so that patient / family feel heard and respected.

Stop regularly discussing DNR or limiting Rxs’ unless this issue is raised by the pt/family or change in condition

Address discomfort within team:Communicate the reasoning behind the treatment decision.

Find other patient-centered goals (pain, dyspnea, support)

Time Limited Trials (ICU, dialysis, vasopressors)

Quill Annals of Internal Medicine 2009

ICU Professional Conflict

Conflicts seen by 72% of ICU staff. (2/3 are severe).

During end-of-life care: Lack of psychological support,

Absence of staff meetings

Problems with decision-making.

Am J Resp & Crit Care Med 2009;180:853-60. One-day cross-sectional survey of ICU clinicians. 7,498 ICU staff members (323 ICUs in 24 countries).

Slide courtesy of Steven Miles, MDUniv of Minnesota

Key Points in End of Life Discussions

Is everybody on the same page regarding the patient’s condition & prognosis?

Focus on GOALS, then recommendations about treatments

Emphasize what you ARE doing… you never stop care, you only stop treatments

Respect the patient & families need for time & support

Weissman, Quill, & Arnold Fast Fact # 226 www.mcw.edu/epercRosseau Seventy Two Hours JAMA 2008

In truth, reverence for life permeates the care that I and colleagues in our field provide. …. Reverence for life does not include hastening

death, nor does it include forcing people to suffer as they die.

As a clinician, it does require me to show up -- with all the resources and skills my training

and experience provide -- and to lean forward, listening to the persons before me and learning how I can best be of service.

Ira Byock The Best Care Possible 2012

Symptom Management Challenges End of Life

Older age (two-thirds are age 65 years or older) Malnutrition, low serum albumin Decreased renal function Autonomic nervous system dysfunction Borderline cognition Lower seizure threshold (metastatic brain involvement, use of

opioids) Long-term opioid therapy Multiple drug therapy

Up to Date.com

4 Essential Drugs• 95 palliative care clinicians in 9 countries• (UK, Europe, New Zealand, S America)• Inpatient palliative care specialists• Preferred Rx in last days of life for cancer

patients – anxiety, dyspnea, nausea and vomiting, pain,

respiratory tract secretions (RTS), terminal restlessness.

• Consensus based, not research basedLindqvist et al, J Pall Med Jan 2013

Pain: morphine (71%)

Dyspnea/breathlessness: morphine (86%)

Anxiety: midazolam (34%) and lorazepam (26%)

Nausea and vomiting: metoclopramide (51%) and haloperidol (36%)

RTS: hyoscine (hyoscine hydrobromide, hyoscine butylbromide: 67%) and glycopyrronium (25%)

Terminal restlessness and agitation: midazolam (40%) and haloperidol (36%)

Lindqvist et al, J Pall Med Jan 2013

South Australian Core Meds

• Evaluation of the medical literature

• Cost (gov’t subsdsidies)• Able to address more

than one symptom• Route(s) of

administration

• Clonazepam• Haloperidol• Hyoscine butylbromide• Metoclopramide• Morphine

Tait and Timothy, Journal of Palliative Medicine July 2013

Death Rattle Lokker, et al JPSM June 2013

Systematic literature review – 1062 articlesBronchial secretion (troubling/noisy/terminal), respiratory (tract) secretions, increasing secretions, noisy-retained secretions, terminal secretions, pulmonary rattles, noisy (rattling/moist) breathing (at the end of life), or respiratory symptoms - are we studying the same process?Occurrence 12% - 92%, mean 35%. Patients usually unconsciousMedian time from the onset of death rattle until death was between 11 and 28 hoursNatural history unknown – some placebo trials show decrease in death rattle scores over time; other trials show increase over timeThe symptom is not resolved in 22%–50% of cases

In a study among nurses, 87% indicated that they felt that death rattle does not distress the dying patient.

But may distress the other patients on the ward

Distress as reported by relatives on themselves5% ‘‘not so distressing’’15% ‘‘slightly distressing’’26% ‘‘distressing’’52% ‘‘very distressing’’

79% of nurses reported distress to themselves

Family PerceptionsShimizu, et al JPSM December 2013

103 Palliative Care Units in Japan; pts died in PCU663 questionnaires mailed to bereaved family with 390 (61%) response rate

181 (46%) respondents experienced death rattle. Of these, 66% of reported high distress levels to themselves53% perceived a strong need for improved death rattle care

Factors influencing high distressunawareness about death rattle being a natural phenomenon, distressing interpretations of death rattle – drowning, suffocating

50% of family members not educated about death rattle

Anticholinergic Load and RTSAcetyl choline – major neurotransmitter in both central, peripheral nervous system, organs, and muscle

Cholinergic effects – sweating, salivary production, diarrhea, bladder emptying, slow heart rateAnticholinergic effects – lack of sweating, dry mouth, constipation, urinary retention, blurred vision, confusion, delirium, rapid heart rate

Commonly used anticholinergicsAtropine drops, Transdermal scopalamine patchHyoscyamine (Levsin)Glycopyrrolate (Robinol)

Sheehan Journal of Palliative Medicine 2011

Death Rattle Is Not Associated with Patient Respiratory Distress: Is Pharmacologic Treatment Indicated?

Campbell and Yarandi JPM 2013

Prospective observational study - 71 terminal pts; 3 inpatient palliative care and hospice units

Death Rattle Intensity Scale (volume) and degree of respiratory distress ….heart rate; resp rate, accessory muscle use; restlessness; grunting at end of expiration; nasal flaring; and fearful facial expression

There was no association between intensity of death rattle and respiratory distress

Infrequent use of anti-secretory meds; when used had limited effectiveness

“Thus, it remains counterintuitive to prescribe medications with limited effectiveness in the face

of no patient distress.” Campbell and Yarandi JPM 2013

“…No evidence to show that any intervention, be it pharmacological or non-pharmacological, was

superior to placebo in the treatment of noisy breathing.”

Wee B, Hillier R, The Cochrane Collaboration, 2012

“Current evidence does not supportthe standard use of (anticholinergic) drugs

in the treatment of death rattle. …care should focus on communication about the symptom with relatives and others involved in the care of these

patients.”

“Regarding the symptom as being part of the normal dying process could contribute to the lowering of distress levels of those involved.”

Lokker, et al JPSM June 2013

Provision of good oral hygiene & nursing care, including managing uncomfortable smells.

Consulting with family members about suctioning

Providing frequent explanations that death rattle is a natural phenomenon

Understanding family’s interpretations and feelings regarding death rattle and providing

emotional support Shimizu, JPSM Dec 2013

Summary

Lack of clinical evidence supporting drug Rx Potential for significant harm of drug RxEducate families and nursing/MD staff IF you feel compelled to Rx with medications

Avoid transdermal during last daysAvoid co-administration of multiple agentsConsider glycopyrrolateDo research and publish a study!

AMERICAN GERIATRICS SOCIETYFeeding Tubes in Advanced Dementia Position Statement

May 2013

1. Percutaneous feeding tubes are not recommended for older adults with advanced dementia. Careful hand feeding should be offered; for persons ‐with advanced dementia, hand feeding is at least as good as tube feeding ‐for the outcomes of death, aspiration pneumonia, functional status and patient comfort. Tube feeding is associated with agitation, increased use of physical and chemical restraints, and worsening pressure ulcers.

2. Efforts to enhance oral feeding by altering the environment and creating patient centered approaches to feeding ‐ should be part of usual care for older adults with advanced dementia.

Older adults with advanced dementia are bed bound, unable to ambulate, and ‐have limited, if any, ability to communicate verbally.

3. Tube feeding is a medical therapy that can be declined or accepted by a patient’s surrogate decision maker in accordance with advance directives, previously stated wishes, or what it is thought the patient would want.

4. It is the responsibility of all members of the health care team caring for residents in longterm care settings to understand any previously expressed wishes of the patient (through review of advance directives and with surrogate caregivers) regarding tube feeding and incorporate these wishes into the care plan.

5. Institutions such as hospitals, nursing homes and other care settings should promote choice, endorse shared and informed decision making, and ‐honor patient preferences regarding tube feeding. They should not impose obligations or exert pressure on patients or providers to institute tube feeding

Benefits and Burdens of PEG Placement

Quality Collaborative Monroe County Medical Society Oct 2010www.compassionandsupport.org

  Starvation Cachexia

Appetite Suppressed in late phase Suppressed in early phase

Body mass index Not predictive of mortality Predictive of mortality

Serum albumin Low in late phase Low in early phase

Cholesterol May remain normal Low

Total lymphocyte count

Low, responds to refeeding

Low, unresponsive to refeeding

Cytokines Little data Elevated

Inflammatory disease

Usually not present Present

Response to refeeding

Reversible Resistant

Thomas, D Clinics in Geriatric Medicine, 2002

Don’t recommend percutaneous feeding tubes in patients withadvanced dementia; instead, offer oral assisted feeding.In advanced dementia, studies have found feeding tubes do not result in improved survival, prevention of aspiration pneumonia, or improvedhealing of pressure ulcers. Feeding tube use in such patients has actually been associated with pressure ulcer development, use of physical andpharmacological restraints, and patient distress about the tube itself. Assistance with oral feeding is an evidence-based approach to providenutrition for patients with advanced dementia and feeding problems; in the final phase of this disease, assisted feeding may focus on comfortand human interaction more than nutritional goals.

Don’t recommend percutaneous feeding tubes in patients with advanced dementia; instead offer oral assisted feeding. Careful hand-feeding for patients with severe dementia is at least as good as tube-feeding for the outcomes of death, aspiration pneumonia, functional status and patient comfort. Food is the preferred nutrient. Tube-feeding is associated with agitation, increased use of physical and chemical restraints and worsening pressure ulcers.

Don’t insert percutaneous feeding tubes in individuals with advanced dementia. Instead, offer oral assisted feedings.Strong evidence exists that artificial nutrition does not prolong life or improve quality of life in patients with advanced dementia. Substantial functionaldecline and recurrent or progressive medical illnesses may indicate that a patient who is not eating is unlikely to obtain any significant or long-termbenefit from artificial nutrition. Feeding tubes are often placed after hospitalization, frequently with concerns for aspirations, and for those who arenot eating. Contrary to what many people think, tube feeding does not ensure the patient’s comfort or reduce suffering; it may cause fluid overload,diarrhea, abdominal pain, local complications, less human interaction and may increase the risk of aspiration. Assistance with oral feeding is anevidence-based approach to provide nutrition for patients with advanced dementia and feeding problems.

http://www.choosingwisely.org/wp-content/uploads/2013/09/AMDA-5things-List_Final.pdf

Teno JM, Gozalo PL, Mitchell SL, Kuo S, Rhodes RL, Bynum JP, Mor V. Does feeding tube insertion and its timing improve survival? J Am Geriatr Soc. 2012 Oct;60(10):1918-21.

Hanson LC, Ersek M, Gilliam R, Carey TS. Oral feeding options for people with dementia: a systematic review. J Am Geriatr Soc. 2011;59(3):463-72.

Palecek EJ, Teno JM, Casarett DJ, Hanson LC, Rhodes RL, Mitchell SL. Comfort feeding only: a proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia. J Am Geriatr Soc. 2010;58(3):580-4.

Sorrell JM. Use of feeding tubes in patients with advanced dementia: are we doing harm? J Psychosoc Nurs Ment Health Serv. 2010 May;48(5):15-8.

Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev. 2009 Apr 15;(2):CD007209.

Gillick MR, Volandes AE. The standard of caring: why do we still use feeding tubes in patients with advanced dementia? J Am Med Dir Assoc. 2008 Jun;9(5):364-7.

Ganzini L. Artificial nutrition and hydration at the end of life: ethics and evidence. Palliat Support Care. 2006 Jun;4(2):135-43.Li I. Feeding tubes in patients with severe dementia. Am Fam Physician. 2002 Apr 15;65(8):1605-11.

Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA. 1999 Oct 13;282(14):1365-70.

Mitchell SL, Kiely DK, Lipsitz LA. The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Arch Intern Med. 1997 Feb 10;157(3):327-32.

http://www.choosingwisely.org/wp-content/uploads/2013/09/AMDA-5things-List_Final.pdf

“It is easy to lose sight of the fact that not eating

may be one of the many facets of the dying

process and not the cause”

Robert McCann, JAMA Oct 13, 1999

Strategies for Family Care

Relieving Family Members’ Sense of Helplessness and Guilt “I know you did everything”

Providing Appropriate Information About Hydration and Nutrition at End of Life

Providing Emotional Support for Family Members Concerns

Attention to the Patient’s Symptoms

Yamagishi, JPSM, 2010

Cardiovascular implantable electronic devices

Hundreds of thousands of US patients have pacemakers (PMs) and implantable cardioverter-defibrillators(ICDs) approx 100,000 ICDs/year alone

Pacemakers protect against bradycardia (too slow) – lightheadedness, fatigue, fainting 0.5 joules

ICDs deliver high energy shock to interrupt a tacchycardia (too fast) heart rhythm to prevent sudden death 15 – 40 joules

ED/EMT Transthoracic Defibrillation “Stand Clear!!” 100-150 joules

Many dying patients with ICDs experience shocks as they approach death hospice survey.. 58% reported pt receiving a shock from ICD

Advance Directives rarely mention devices Buchhalter JAMA Internal Medicine Nov 2013

Cardiovascular implantable electronic device (ICD)deactivation Buchhalter et al JAMA Int Med Nov 25, 2013

Retrospective review of 150 patients at Mayo Clinic, Rochester, Minnesota Nov 2008 –Dec 2012 (approx 3 deactivation per month)Median age, 79 years; 67% male, 99% had poor or terminal prognoses. Half of the deactivation requests were made by surrogates.

Deactivation of ICDs and PMs 90% died w/in 1 month Median survival 0-3 days 3% alive at 1 year

Causes of death: cardiovascular disease (71 patients)neurologic disease (19), cancer (18), MOSF (13), respiratory disease (10) and other (15)

Reasons for requestsAvoid shocks during dying processAvoid device interfering with a natural death

43% palliative medicine consultation 2% ethics consultations

Buchhalter JAMA Internal Medicine Nov 2013

Deactivation of ICDs and PMs

2 MD refusals - both pacer dependent patientsGuidelines (Heart Rhythm Society & Insitutional)

Provider conscientious objectionPatient’s right to transfer care

3 Ethics Consultsintra-family conflictinconsistent EOL request by patientAD differing from surrogate request

http://archinte.jamanetwork.com/multimedia.aspx

Patient Survey - ICDsICD patients 50 yrs and older @ Yale University EP practice Jan 2006 – Dec 2009

136 eligible patients 95 (70%) agreed to participate. Mean age was 71 years 28% F 19% nonwhite.Mean duration of ICD placement was 4.0 years29% had received a prior ICD shock.

31% reported “unknown” or “no” benefits of their ICD

Other responses (number)restarting the heart (31) living longer (27)improving quality of life (7), 3 patients thought the ICD prevented Afib/ stroke

60 participants could not name a potential harm

Dodson et al JAMA Int Med March 2013

Dodson et al JAMA Int Med March 2013

Dodson et al JAMA Int Med March 2013

Participants were then read a standardized script providing the best current evidence regarding benefits and burdens of ICDs. Then …. asked

Would you want your ICD deactivated if:(1)Permanently unable to get out of bed(2)Permanent memory problems(3)Burden to family members(4)Prolonged mechanical ventilation (1 month)(5)Advanced incurable disease.5 point scale Definitely No ….Definitely yes

71% responded Probably yes or Definitely yes to at least 1 scenario 61% adv incurable 24% unable to get OOB

Dodson et al JAMA Int Med March 2013

Dodson et al JAMA Int Med March 2013

Don’t leave an implantable cardioverter-defibrillator (ICD) activated when it is inconsistent with the patient/family goals of care.In about a quarter of patients with ICDs, the defibrillator fires within weeks preceding death. For patients with advanced irreversible diseases,defibrillator shocks rarely prevent death, may be painful to patients and are distressing to caregivers/family members. Currently there are noformal practice protocols to address deactivation; fewer than 10% of hospices have official policies. Advance care planning discussions shouldinclude the option of deactivating the ICD when it no longer supports the patient’s goals.

RecommendationsPatient education needed regarding benefits/risks Upfront discussions re prognosis / goals / AD’s

Implantation/ Generator Change/Med ConditionRole for palliative care

No longer considered “life-long” therapyAddress deactivation on admission to hospice and EOL discussions AND / avoid shocks vs “deactivating a device”

Does your Hospice have a policy? Annals of Int Medicine 2010

survey of 900 hospices 414 responded97% of hospices admitted patients with ICDs42% of patients with ICDs had the shocking function deactivated.Only 10% of hospices had a policy that addressed deactivation

http://aging.stanford.edu/2013/11/story-jerry-romano/

Selected References and Resources

Smith, A. et al. Half Of Older Americans Seen In Emergency Department In Last Month Of Life; Most Admitted To Hospital, And Many Die There. Health Affairs, 31, no.6 (2012):1277-1285

Pellegrino, E. Decisions to Withdraw Life-Sustaining Treatment. JAMA; 283, 2000: 1065-1067 Rosielle, D. Fast Facts. End of Life / Palliative Resource Education Center. Medical College of Wisconsin http://www.eperc.mcw.edu/EPERC/FastFactsIndex

Rousseau, P Seventy Hours.  JAMA. 300, 2008: 882-883 Quill, TE et al. Discussing Treatment Preferences With Patients Who Want “Everything” Annals

of Internal Medicine: 151, 2009:345-349.Shah, et al “What Bothers You the Most?” Initial Responses From Patients Receiving Palliative

Care Consultation. AM J HOSP PALLIAT CARE 2008; 25: 88-92 Back A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill Patients: Balancing

Honesty With Empathy and Hope. Cambridge, England: Cambridge University Press; 2009Teno, Jet. al. Change in End of Life Care for Medicare Beneficiaries. JAMA. 2013; 309: 470-

477.Tulsky, J. “Palliative Care: Identifying the Need and Beginning the Conversation.” Webinar

2013.Schenker, Y et al. I Don’t Want to Be the One Saying ‘We Should Just Let Him Die’:

Intrapersonal Tensions Experienced by Surrogate Decision Makers in the ICU. J Gen Int Med. Pub online July 2012.

You, J. et al. Just ask: discussing goals of care with patients in hospital with serious illness. CMAJ 2013

Teno JM, Gozalo PL, Mitchell SL, Kuo S, Rhodes RL, Bynum JP, Mor V. Does feeding tube insertion and its timing improve survival? J Am Geriatr Soc. 2012 Oct;60(10):1918-21.

Hanson LC, Ersek M, Gilliam R, Carey TS. Oral feeding options for people with dementia: a systematic review. J Am Geriatr Soc. 2011;59(3):463-72.

Palecek EJ, Teno JM, Casarett DJ, Hanson LC, Rhodes RL, Mitchell SL. Comfort feeding only: a proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia. J Am Geriatr Soc. 2010;58(3):580-4.

Sorrell JM. Use of feeding tubes in patients with advanced dementia: are we doing harm? J Psychosoc Nurs Ment Health Serv. 2010 May;48(5):15-8.

Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev. 2009 Apr 15;(2):CD007209.

Gillick MR, Volandes AE. The standard of caring: why do we still use feeding tubes in patients with advanced dementia? J Am Med Dir Assoc. 2008 Jun;9(5):364-7.

Ganzini L. Artificial nutrition and hydration at the end of life: ethics and evidence. Palliat Support Care. 2006 Jun;4(2):135-43.

Li I. Feeding tubes in patients with severe dementia. Am Fam Physician. 2002 Apr 15;65(8):1605-11.

Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA. 1999 Oct 13;282(14):1365-70.

Mitchell SL, Kiely DK, Lipsitz LA. The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Arch Intern Med. 1997 Feb 10;157(3):327-32.

Quality Collaborative Monroe County Medical Society. Benefits and Burdens of PEG Placement. www.compassionandsupport.org

Yamagishi, A et. al. The Care Strategy for Families of Terminal Ill Cancer Patients Who Become Unable to Take Nourishment Orally: Recommendations from a Nationwide Survey of Bereaved Family Members Experiences. Journal of Pain and Symptom Management: 40, 2010: 671-683.

Lindqvist, O. Four Essential Drugs Needed for Quality Care of the Dying: A Delphi-Study Based International Expert Consensus Opinion. J Pal Med. Vol 16; 2013. Campbell, M et al. Death Rattle Is Not Associated with Patient Respiratory Distress:Is Pharmacologic Treatment Indicated? J Pal Med. Vol 16, Oct 2013

Sheehan, Retrospective Analysis of Primary Diagnosis, Comorbidities,Anticholinergic Load, and Other Factors on Treatment for Noisy Respiratory Secretions at the End of Life. J Pal Med. 2013:14; 1211-1216.

Shimizu, Y. Care Strategy for Death Rattle in Terminally Ill Cancer Patients and Their Family Members: Recommendations From a Cross-sectional Nationwide Survey of Bereaved Family Members’ Perceptions. Jrnl Pain & Symptom Mamangement.2013.

Wee, H. Interventions for noisy breathing in patients near to death

(Review). CochraneReview. 2012.

Buchhalter, L. Features and Outcomes of Patients Who Underwent Cardiac Device Deactivation. JAMA Intern Med. Published online November 25, 2013.

Dodson, J. Patient Preferences for Deactivation of Implantable Cardioverter-Defibrillators. JAMA Intern Med. 2013; 173; 377-379.

Goldstein, N. Management of Implantable Cardioverter-Defibrillators in Hospice: A Nationwide Survey. Annal of Intern Med. 2010; 152: 296-299