BioethicsUNIVERSITY HOSPITAL OF SUNY UPSTATE MEDICAL UNIVERSITY SYRACUSE, NEW YORK

November 2005

inbrief

C A S E S T U D Y

(This case is written by a caregiver; all remarks are direct quotes fromher. At the end of the column, a physician comments on the issues raisedby the article.)

The CasePG, 83, lives in western New York, 60 miles south of Buffalo. Whilevisiting her daughter and son-in-law for Christmas in 2004, she washospitalized with pneumonia. After discharge, she recuperated for a fewdays at her daughter’s and then, although weakened, returned to herhome. Early in January, she slipped from her recliner, broke a hip, andwas hospitalized for a hip prosthesis. From there she went to a nursinghome for rehabilitation but shortly after became ill and was hospitalized inErie, Pennsylvania, where she eventually required a colectomy andileostomy. From late December to mid-February, her daughter, SH, wasby her side. In mid-February, PG came by ambulance to a nursing homein Syracuse for further rehabilitation. She was able to go back to herhome in early April 2005. In the following paragraphs, PG’s caregiverdescribes the various dilemmas that can beset both patient and family asthey try to navigate the health care system.

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Culture and CaregivingThe challenges of working withdiverse patient populations extendto the patients’ families and care-givers. It is important for healthcare professionals to recognizepossible problems or issues thatmight arise when preparing totreat or discharge patients who donot share the Western perspectiveof illness and its accompanyingexpectations.

CULTURAL BARRIERS

For a patient whose language oforigin is not English, the medicalencounter in the emergency roomor physician’s office can be bewildering and frightening. Ifthe physician is not aware ofcultural norms, the simplest ofintroductory procedures (a directeye-to-eye greeting, a handshake,a vague question) can ruin thechance for an honest and thoroughexamination. If the patient doesnot understand English, thephysician needs to know thatcertain family members may notbe the proper ones for translationregardless of their speaking abilities or presence in the room.

Discharge planners need to takeinto account what levels of careare available at home. Manycultures do not believe in theconcept of assisted living ornursing home care; they seefamily as the only place wherethe ill person should go. But doesthe family fully understand whatthe care will entail? Is theresomeone at home who can read

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From the Caregiver’s Perspective

BioethicsETHICS COMMITTEE

inbrief

Bioethics in Brief is a newsletter of the Centerfor Bioethics and Humanities, in cooperationwith University Hospital’s Ethics Committee.

Questions, suggestions, or comments? Would you like to be added to our mailing list?E-mail us at cbh@upstate.edu

Have a question about an ethical issue? We are always happy to talk in confidenceabout ethical concerns; you may reach us at the Center for Bioethics and Humanities at 464-5404. Ethics consultations are available bycalling the hospital operator (464-5540) andasking for the ethics consultant on call, or bycontacting any of the ethics consultants at thecenter (Robert Daly MD; James Dwyer PhD;Kathy Faber-Langendoen MD; Robert S. OlickJD, PhD; and Joel Potash MD).

Editorial Board

Editor-in-Chief: Deirdre Neilen PhD

Managing Editor: Robert S. Olick JD, PhD

Advisory Editor:Kathy Faber-Langendoen MD

Writers: Edgar Dahl PhD; Barb Fero RN, NP;Rebecca E. Garden PhD; Deirdre Neilen PhD;Robert S. Olick JD, PhD; Joel Potash MD

Design and Production: Marketing andUniversity Communications, Melanie Rich,Director

The Center for Bioethics and Humanities atSUNY Upstate Medical University, establishedthrough the generous support of the MedicalAlumni Association, is committed topromoting clinical health care and healthpolicy which is patient-centered, compas-sionate, and just. We accomplish this througheducational initiatives in bioethics and themedical humanities, clinical ethics consul-tation, and multidisciplinary research andscholarly writing.

Opinions expressed in Bioethics in Brief arethose of the authors and should not be takento represent the position of UniversityHospital or the Center for Bioethics andHumanities. Information about sources used inthe newsletter can be obtained by calling theCenter for Bioethics and Humanities, 464-5404.

© 2005 Center for Bioethics and Humanities. Permission is granted to make up to 20 copies for institutional use.

C O M M U N I T Y O F C A R I N G

While the nuclear family is often assumed to be the ideal source for caregiving, the fact remains that many in the U.S. who are ill ordisabled live alone and cannot turn to family members for help. Inaddition, simply having family members does not guarantee that theyare available or that they want to give care when it is needed. Filling inthe space on forms that ask whom to contact in case of emergency iseasy for a patient with a healthy partner. For those who live alone, itcan serve as a painful reminder of their isolation and vulnerability. On the other hand, it can be an opportunity: a chance to broaden ourdefinition of community and turn to friends for aid and companionship.

According to a New York Times article (“Alone in Illness” by JaneGross, published on August 26, 2005), “in 2003 nearly twenty-sevenpercent of American households consisted of one person living alone, up from eighteen percent in 1970, putting a premium on friendship, arelationship without the legal status or social standing of kin.”

Hospitals planning discharges can encourage patients who live alone towork out a care relationship with a reliable friend or neighbor.Friendship and a mutual commitment to care and support can make allthe difference to a single person with illness or disability. A friend maybe better at taking notes and asking important questions than a familymember, who may be emotionally overwhelmed by the experience.

THE VALUE OF FRIENDS

The New York Times article describes one woman who relies on agroup of friends rather than just one person: “Barbara chose friends

When the Primary Caregiver Is Not Family

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When the Primary CaregiverIs Not Family

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Patients, Families and Organ DonationHealth care professionals and students alike have long been both puzzledand troubled by the apparent authority of family members to veto adying patient’s expressed wish to be an organ donor. Technically the lawgrants no such power. The Uniform Anatomical Gift Act, adopted insome form across the 50 states, specifies that family members maydecide to donate a loved one’s organs upon death “absent contrary indi-cations” of the patient’s wishes. But for many years the law offered littleor no guidance as to how to resolve a conflict where the patient says yesbut the family says no. The result has been a de facto veto power in thefamily, sometimes even in the face of clear evidence of the patient’swishes in the form of an organ donor card or driver’s license designation.A frequent observation explains but does not justify this practice:families upset by organ retrieval over their objection may sue, but failureto honor the patient’s donative intent poses no such risk.

THE PATIENTS’ WISHES RULE

Recent changes in New York law resolve this dilemma in favor ofhonoring patient wishes. New York law now clearly states that consentto donation is not rescinded by family objection, unless it is shown that the donor revoked his or her consent. Giving teeth to this morerigorously patient-centered approach, the law establishes primacy of therights of the transplant recipient. University Hospital policy has beenrevised to reflect these changes in the law.

A number of other states have moved in the same direction, sometimescoupling donor registries with rules that the patient’s “first personconsent” trumps family objections. These policy initiatives are awelcome development. Beyond securing respect for patient/donorautonomy, hopefully they will increase the supply of viable organs fortransplant. Yet local organ procurement organizations in some stateswith first person consent laws reportedly still seek family consent. Theutility of law to effectuate changes in clinical behavior and practice isworthy of careful study. Sometimes changing rules is easier thanchanging culture.

–Robert S. Olick

who had cancer to join her atdoctors’ appointments when shewas assessing treatment options.She chose those who shared herlove of art and theater to keep herdistracted with outings...whileawaiting the pathology report.”Gross also found a group ofneighbors (more acquaintancesthan friends) who organized themselves to provide a networkof support: “Their purpose is tobe available to one another intimes of need, like when someonerequires a companion for the triphome after a colonoscopy.”

THE MYTH OF INDEPENDENCE

Americans take great pride inbeing self-reliant and independent;we are encouraged to keep ourtroubles to ourselves or at leastwithin the family. Illness, aging,and their attendant problems,however, will dispel these mythsof independence. We need to beopen-minded about asking forhelp and realistic about who willbe there for us. Thinking creativelyabout a network of care thatextends beyond current social andlegal definitions of “family” is agood way to begin this process.

–Rebecca Garden

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N U R S E S ’ C O R N E R

What is a nurse to do when anassessment of the status of thepatient and the plan for discharge inthe face of limited or non-existenthome care resources leads to a serious doubt that the dischargewill be a safe one?

Mr. Miller, 83 years old, has beenhospitalized for over a week.Recovering from a bout of pneumonia, he is still very weakand has a poor appetite, but hisinfection has been treated and hisrespiratory status stabilized. He nolonger needs acute care. Displayinga rather ornery mood, he tells hisnurse that he is anxious to leavethe hospital and get back to hishome where he can “get a goodnight’s sleep and some real food.”He still requires a great deal ofassistance with all activities, especially ambulation.

The problem is that the only assistance available at home willcome from his wife who is also

over 80 years old and has multiplehealth problems of her own. Thecouple lives in a remote areaseveral miles from any community.No other family members live inthe area. Their only social supportis membership in a church located20 miles from their home. Mr. andMrs. Miller have always pridedthemselves on their pioneer life,preferring to live away from trafficand crowds. They have few assetsbut have needed little because oftheir simple lifestyle.

GOOD INTENTIONS OFTEN INADEQUATE

Members of the nursing staffcaring for Mr. Miller during hishospital stay have assessed notonly his ability to care for himself,but also the ability of his wife toadequately assist him at home.They have expressed many concernswith what they see as an unsafeplan for discharge to home. Homecare agency resources are verylimited in the rural area where theMillers reside. The nurses fear a

bad outcome without adequatecare and have concluded thattransfer to a rehab facility is theonly safe plan for Mr. Miller.

HONOR A LIFE’S PROMISE?

The care coordination nursesuggested to the couple that ashort stay at a rehabilitationfacility would be beneficial inhelping Mr. Miller gain strengthbefore returning home. Mrs. Millerstated that she and her husbandexchanged promises that they wouldnever even consider allowing eachother to go to a nursing home. Shepromised that she would alwaystake care of him in the home theyhave shared for over 50 years.Both she and her husband becameadamant that going home was theonly acceptable plan.

In this case, two ethical principlesof nursing practice come intoconflict: the responsibility toprotect patients under their care and the need to respect

Discharge into an Unsatisfactory Care Situation

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Edmund D. Pellegrino, MD Appointed New Chair of the President’s Council on Bioethics

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The White House has appointed Edmund D. Pellegrino, MD to be the new chair of the President’s Council on Bioethics. Dr. Pellegrino,85, is Professor Emeritus of Medicine, founder ofthe Center for Clinical Bioethics at GeorgetownUniversity Hospital, and former Director of theKennedy Institute of Ethics at GeorgetownUniversity in Washington, DC. He has publishedmore than 20 books and 500 articles. His distinguished career was celebrated with a LifetimeAchievement Award from the American Society for Bioethics andHumanities in 1998.

“I am honored to have the opportunity to participate in this very important work,” Pellegrino said in a prepared statement. “The Councilhas set a very high bar in addressing many of the serious bioethicalissues before our country. However, many significant issues remain,ranging from the challenges of ensuring access to health care to meetingcritically important needs in end-of-life care.”

The President’s Council has taken a number of conservative and controversialpositions on such issues as cloning, stem cell research, and aspects ofassisted reproduction. Critics of the Council have charged that it hasfunctioned as a “post-hoc think tank” that has provided intellectualsupport for administration policies. Whether Pellegrino’s leadership willset a new course or a new tone will be keenly watched by bioethicistsand policymakers alike.

–Edgar Dahl

the autonomy of a competentpatient to make his or her owndecisions. As they discuss theirdistress, the nurses agree that itis probably true that Mr. Millerwill have both a better appetiteand more rest at home. Familiarhome surroundings often aremore comfortable than thehospital environment for elderlypatients. On the other hand,they have legitimate concernsregarding Mr. Miller’s manyneeds and his dependence on hiswife to meet all of them. Theyworry about the effects on Mrs. Miller’s own health becausebeing the sole caregiver willcreate a hardship for her.

LESS THAN PERFECT MAY BE OK

Cases such as these serve toremind nurses that they are notsurrogate parents or guardiansfor their patients and that theycannot always fix a patient’ssocial support system. Theprimary responsibility remainsthe support of the patient in allways possible. Competentpatients who are committed to aless than perfect plan for them-selves are entitled to autonomy.Most discharge planning nursesengage in supportive dialoguewith patients. The nurse can behonest in stating her or his opinion that this plan is not thebest plan but that the team willsupport the decision. In this way,the nurse leaves a door open bymaking it clear to the patientand caregiver that they cancontact her or him if the plan isnot going well.

–Barb Fero

Websites of Interestwww.nofec.orgNOFEC is the National Organization for Empowering Caregivers.It provides assistance, education, support, referrals and respitevolunteers for informal family caregivers, and promotes publicawareness about the realities of caregiving.

www.care-givers.comA related and interactive website that features chat rooms, messageboards and a vast number of resources.

www.nlm.nih.gov/medlineplus/caregivers.htmlThe MedlinePlus website is a service of the US National Library ofMedicine and the NIH and has a major section on caregiving.

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Discharge into an UnsatisfactoryCare Situation

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THE DAUGHTER SPEAKS

SH (PG’s daughter and caregiver):When my mother arrived forChristmas, she was much weakerthan usual. She had not beeneating well and had not been ableto do her exercises to maintain herstrength. Her mind was not assharp as usual. When Mom is sickshe gets lethargic, sleeps a lot, anddoesn’t “participate” as she usuallydoes. I suggested that she see adoctor here but she did not wantto spoil Christmas. On myhusband’s birthday, Mom noticedthat her heart was beating fast andshe was short of breath. Myhusband (a physician) took her to ahospital; she was admitted withserious pneumonia and a very highwhite cell count. My job was tovisit Mom and to care for her dog.

It was hard to talk with herdoctors even if we set an appointedtime. They rarely could seem tomake those meetings. I am Mom’sHealth Care Proxy but she madeall of her own medical decisions.She has a living will stating shedoes not want to be resuscitated.

When she came back to our housefrom the hospital, her legs weretremendously swollen and oozingcopious amounts of clear fluid. We had to wrap them in bathtowels and change the towelsfrequently. She mostly stayed inbed and we took her meals to her,made sure she took her medicines,and took care of her dog.

LIFE GOES ON HOLD

We had planned a trip to Europefor the beginning of the year andMom insisted she be taken to herown home so as not to spoil ourplans. I arranged for someone to

come each morning for two hoursto get her breakfast and take careof the dog. She already had someoneto clean her house and do herlaundry and her cousin comes fiveevenings a week to prepare dinnerand keep her company. She alsohad a companion three afternoonsa week to run errands, drive her toappointments, etc. We increasedthis to five afternoons. Mom nowrequired home oxygen. We cancelledour trip to Europe, which didn’tplease Mom, but this allowed us tostay with her an additional twoweeks. I noticed that there wereunpaid bills piled up at the houseand I tended to those.

While we were there, Mom slippedfrom her chair and broke her hip.The rescue squad took her to anER and then to a bigger hospital inthe next town. Her hip prosthesisoperation went well and she waswalking the next day. She neededinpatient rehab for her hip. Shechose a nursing home near herhome because there were familyand friends there (even though weall had concerns about the qualityof care). Although it was verydifficult to leave her, I came backto Syracuse after she was settled inthe nursing home to return to work.

The next week Mom had baddiarrhea. The nursing home calledher doctor and asked for medicinebut they never called me or askedher doctor to visit. Four days later,a cousin called us and said Momlooked terrible. We called herphysician and insisted that he visither. He did the next morning andsent her to the ER and then to ahospital ICU in Erie, PA, in criticalcondition. We immediately drove240 miles to Erie. Erie is about anhour from Mom’s house and Imade the trip two or three times aday for the next few weeks,

returning to her home to take careof her dog, to eat, and to sleep. Itwas snowy and dark for many ofthe trips. My husband came for theweekends and would spell me forsome of the visits so I could rest.

Mom eventually had to have herinfected colon removed because itdidn’t respond to antibiotics. Thegastroenterologist and the surgeondisagreed about the urgency of thesurgery. As sick as she was, Momwas still making her own decisions—at first to hold off the surgery,and when she didn’t improve later,to have it. My job was to makesure she understood what the variousdoctors were saying so that herdecisions were well informed.Mom was quite sure she was notready to die.

THE SHIP WAS MISSING A CAPTAIN

We discovered during this prolongedand complicated hospital stay thather many specialists did not seemto communicate to each other orto the hospitalist who oversaw hercase. Fortunately, the hospitalist wasgenerally available to talk to me.Our ship needed a captain.

In all three hospitals there wereproblems controlling her pain.Mom has a chronic pain problem.We repeatedly had to convince thedoctors not to stop or cut back onher usual pain meds and then insistthat they address the new pain shehad from her pneumonia, hipfracture, and colon problems. I feltextremely fortunate that the firstmonth of her illness occurredduring winter break at the Universitybecause I was able to manage someof my professional responsibilitiesvia phone and e-mail.

When she was ready for discharge,Mom was very weak and unable towalk; her legs were again swollen

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and constantly weeping. This timeshe chose to get rehabilitation at anursing home in Syracuse, arrivingthere by ambulance in mid-February.We hired a private “ostomy” nursefor Mom. They hit it off and fromday one we didn’t have to tend toher colostomy. My husband and Itook turns visiting every day. I didher laundry, ran her errands, andordered and picked up theequipment she needed before going home.

RESTORING INDEPENDENCE

We tried to be there for at leastone meal each day to encourageher to eat. I never did meet hernursing home physician in the sixweeks she was there. Pain controlremained a serious problem. Momsaid her physician called her an“addict” at one point. Throughoutthis whole ordeal, my goal was tohelp her make her own decisionsand to regain as much independenceas possible. Mom told me her goalis never to live in a nursing home.

My mom’s illnesses at times left meexhausted. I was naturally anxiouswhen she was not doing well, but mystress also increased over our fairlyconstant inability to communicatewith Mom’s doctors during herfirst two hospitalizations. Thenurses were very helpful and caringat each of the places Mom stayed.But I wonder how caregiverswithout my resources and abilityto take time away from work orwithout my husband’s medicalknowledge are able to manage.

LACK OF INTEGRATED CARE

Although I seldom felt as though Iwere in the way or that my questionswere unimportant at the hospitalin Erie, this was not the case in theother two hospitals. And even in Eriewhere several doctors spent asmuch time with me as I needed,

the system was not designed tohelp caregivers navigate thelabyrinth of tests, results, and thenprognosis. It was very frustratingthat there was at the same timeboth too much information abouttest results and yet not enoughinformation about Mom. Eachphysician was treating just his/her“piece” of Mom.

Caregivers are often the first lineof a patient’s defenses. Helpingthem is smart medicine.

PHYSICIAN’S COMMENT:

A model for dealing with patientsand their families/significantothers is useful since patientsoften need the advocacy ofcaregivers, especially ifthey are very sick orlack decisionalcapacity. The ques-tions asked by care-givers on behalf ofthe patients shouldbe welcomed by themedical andnursing staff. Inaddition, the staffmight want to asksome questions oftheir own aboutthe caregiver.

Would it help PG’sphysicians, nursesand social workers toknow that SH, inaddition to facing hermother’s life-threateningillnesses, lives in Syracuse,has to travel one hour eachway to the hospital in Erie inthe dead of the winter, and isremoved from her own supportgroup while she is doing this?Further, should the health team askthese questions: Who is thisdaughter who stays at her mother’sbedside for varying intervals

throughout the day? Do we knowand appreciate her role in hermother’s recovery and well-being?Have we inquired about her well-being in more than a perfunctoryway? Is there a system in place topromote daily communication by aresponsible physician with thecaregivers?

–Joel Potash

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the prescriptions and properlydistribute correct doses?

In the hospital too, culture canimpede care if stereotypes areallowed to trump knowledge andsensitivity. For example, certainAsian cultures shy away fromorgan transplants believing thatthey prevent the soul in the nextlife from being whole. Perhaps thisis why a Hmong patient or hiscaregiver might be resistant to theidea of a kidney transplant.However, good care mandates thatthe physician engage in a conver-sation with the patient and thepatient’s caregivers (if the patientwants them present) beforeassuming that this patient wouldnot want such a procedure done.

The notion of autonomy currentlyholds primacy of place in ourethical canon in the United States.Other cultures, however, do notwant such an emphasis on the individual’s right to know andchoose treatment. They prefer toinvolve family and sometimes in atightly structured hierarchy.Physicians and nurses need to

understand these traditions if theyare to involve their patients in theirtreatment and care. For example,Latino families often incorporatesiblings, more distant relatives, andclose family friends into decision-making processes. And in theirhome countries, Asian familiesoften provide care for familymembers in the hospital ratherthan nursing staff. Some patients

rely on life partners and friendsrather than legal spouses and/orrelatives for support and homecare. Rather than an annoyance,such traditions can be incorporatedinto the patient’s treatment plan,possibly creating a more optimaloutcome with less stress on both sides.

–Deirdre Neilen

Center for Bioethics and Humanities750 East Adams StreetSyracuse, New York 13210

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