CP IRC Dialysis Discontinuation and Palliative Care

Prévia do material em texto

Dialysis Discontinuation and Palliative Care
Lewis M. Cohen, MD, Michael Germain, MD, David M. Poppel, MD, Anne Woods, LICSW,
and Carl M. Kjellstrand, MD
c Little attention has been accorded to the terminal course and end-of-life care of patients after dialysis discontinu-
ation. This prospective cohort observational study involves six dialysis clinics in the United States and two clinics
in Canada. Data were collected on 131 patients who were undergoing maintenance dialysis and died after treatment
discontinuation. Seventy-nine of the patients (60%) were prospectively studied until their deaths. Care-
givers and families provided information about the symptoms and treatment provided in the final 24 hours of life,
and structured interviews were conducted at the time of stopping dialysis with patients and families. The patient
population was primarily white (73%), elderly (70 6 1.2 years), and diabetic (46%). Three quarters of the subjects had
between three and seven comorbid conditions. Pain and agitation were the most common symptoms during the last
day of life. Terminal treatment was generally considered to be satisfactory, and most people had good deaths.
Although dialysis prolongs life, the integration of palliative medicine into dialysis programs offers opportunities to
improve the quality of end-of-life care, especially for those patients who elect to stop treatment. Recommendations
include making advance care planning an expectation at all clinics and using quality-of-dying measures to establish
benchmarks for the provision of terminal care.
r 2000 by the National Kidney Foundation, Inc.
INDEX WORDS: Dialysis discontinuation; palliative care; quality of life.
ALTHOUGH DIALYSIS discontinuation hasbecome an increasingly common phenom-
enon, little is known about the terminal course of
this patient population. Reflecting society’s en-
dorsement of a variety of decisions that diminish
suffering and hasten death in medical practice,1
the rate of dialysis termination has doubled in the
past decade, and one in five patients with end-
stage renal disease (ESRD) is withdrawn from
dialysis before death.2,3 Bioethical approval of
decisions to terminate life-support treatment is
based on the principle of respect for patient
autonomy and the belief shared by patients, fami-
lies, and physicians that the promise of a good
death is preferable to prolonged and onerous
suffering.4
Drawing its sample from a single geographic
area, a pilot study by Cohen et al5 was the first of
a handful of prospective studies on dialysis dis-
continuation.6,7 The present multicenter study is
designed to further describe the clinical picture
after dialysis cessation and to delineate a role for
modern palliative medicine.
METHODS
Eight dialysis clinics in the United States and Canada
were enrolled onto the study, including Greater Springfield
Dialysis Units, Springfield, MA; Berkshire Medical Center,
Pittsfield, MA; Greenville Dialysis Center, Greenville, NC;
Toronto Hospital, Toronto, Canada; Yankee Family Dialysis,
Greenfield, MA; Southern Maine Dialysis Facility, Portland,
ME; University of Alberta Chronic Renal Failure Program,
Alberta, Canada; and Albert Einstein Medical Center, Phila-
delphia, PA. Joined by a common interest in this subject, the
dialysis programs otherwise varied in several areas, includ-
ing size, academic versus proprietary, free-standing versus
hospital-based, and the ratio of hemodialysis to peritoneal
dialysis. They also had widely varying rates of dialysis
discontinuation, ranging from 8% to 53% of patient deaths.
The comparative demographics of each dialysis program are
available on request from the first author. Although the
demographics of the programs vary, this variation did not
explain the different discontinuation rates between pro-
grams.
A team was established at each site, consisting of a
nephrologist, psychiatrist, and renal social worker. The in-
formed consent and research protocols were approved by the
local institutional review boards. The study was described to
all nephrologists in the practice, who notified the study site
team when adult patients stopped maintenance dialysis and
whether the patient’s mental status or physical condition
would permit a meaningful interview. The site team psychia-
From the Department of Psychiatry, Baystate Medical
Center; Western New England Renal Associates, Spring-
field, MA; Department of Medicine, Loyola Medical Center;
and Aksys Ltd, Chicago, IL.
Received September 29, 1999; accepted in revised form
January 21, 2000.
Supported in part by grants from the Greenwall Founda-
tion; and the Project on Death in America, a program of the
Open Society Institute, New York, NY. L.M.C. is currently a
Fellow in the Faculty Scholars Program of the Project on
Death in America and is supported in part by the Excellence
in End-of-Life Care Program of the Robert Wood Johnson
Foundation.
Address reprint requests to Lewis M. Cohen, MD, Bay-
state Medical Center, Department of Psychiatry, Springfield,
MA, 01199. E-mail: lewis.cohen@bhs.org
r 2000 by the National Kidney Foundation, Inc.
0272-6386/00/3601-0018$3.00/0
doi:10.1053/ajkd.2000.8286
140 American Journal of Kidney Diseases, Vol 36, No 1 (July), 2000: pp 140-144
trist or social worker contacted the patient and/or family,
described the study, and requested consent for participation.
Parallel structured interviews were conducted with patients
and/or families.
Symptom management was assessed through follow-up
contacts with the caretakers every 3 days until the death;
data were also obtained from nursing staff or family concern-
ing the patient’s last 24 hours. Information about demograph-
ics and medical history was compiled from chart review,
ESRD death certificate forms, and information supplied by
the regional ESRD Networks. The networks provided an
opportunity to check on completeness of reporting and
potential bias in selection.
Simple frequencies of responses to 24-hour follow-up
forms, chart review, demographic data, and interview ques-
tions, along with the means, SEs, and percentiles for continu-
ous-scale data, were produced.
RESULTS
There were 131 deaths preceded by dialysis
discontinuation during the 2-year data collection
period (briefer for some of the programs). Forty-
nine subjects (37%) were not referred or referred
too late to be interviewed, and 3 subjects (2%)
refused to participate. Interview and follow-up
data were obtained from 79 subjects (60%).
Other than a greater referral of women than men
(chi-square 5 6.9; P 5 0.008), there was no
significant difference between participants and
nonparticipants.
Of the patients discontinuing dialysis, 59%
were women; 73%, white; 22%, black; and 6%,
Asian or Hispanic. The mean age was 70 years
(range, 17 to 89 years), and the mean duration of
dialysis therapy was 34 months (range, 3 to 167
months). The major causes of renal failure were
diabetes (46%), hypertension (29%), and glo-
merulonephritis (10%), whereas the most recent
modes of dialysis were in-center hemodialysis
(83%), continuous ambulatory peritoneal dialy-
sis (11%), continuous cycling peritoneal dialysis
(5%), and home hemodialysis (2%).
At the time of referral, only 23 of the 79
patients (29%) who discontinued dialysis could
be meaningfully interviewed. Interviews were
conducted with 76 of 79 of the participating
families (96%), and in 20 cases, both patients
and their families were interviewed. Approxi-
mately 60% of the sample had previously com-
pleted a formal advance directive; the majority
of these patients had appointed a loved one as a
health care proxy. The decision to stop dialysis
was generally prompted by progressive physical
deterioration (Table 1).
At discontinuation, 77% of the participants
had between three and seven comorbid condi-
tions, including neurological (64%) and cardio-
vascular(63%) disorders. Specific comorbid con-
ditions included coronary artery disease (50%),
peripheral vascular disease (50%), and poorly
controlled hypertension (38%). Half the subjects
(52%) had inanition, or failure-to-thrive, syn-
dromes, and other problems included neuropa-
thies (34%), blindness (18%), gastroparesis
(14%), and malignancies (12%). Twenty-six per-
cent of the sample had a history of cerebral
vascular abnormalities, and 23% had illnesses
involving dementia. The mental status of the
subjects at 48 hours after the decision to with-
draw from dialysis varied from alert (43%),
somnolent (46%), and comatose (11%). Patients
received terminal care either in the hospital
(61%), nursing home (24%), inpatient hospice
(2%), or at home (13%).
After the decision to discontinue dialysis, non-
palliative medications and unnecessary labora-
tory tests and radiographs were appropriately
stopped in most patients; in only four cases,
routine blood testing was continued for a few
days. Pain medications were prescribed and ad-
ministered on at least one occasion for 87% of
the patients, an additional 9% had analgesics
prescribed only, and 4% had no pain medication
prescribed. Oxygen was provided for 22% of the
subjects. Ultrafiltration for pulmonary distress
was not needed in any of the patients.
Information was obtained from caregivers
(mostly nurses) and/or families (usually spouses
and/or adult children) concerning the last 24
hours of life of all of the participants (Table 2). In
their opinion, treatment was effective for 93% of
the patients. Families and/or staff were present at
the time of death in 71% of the cases, whereas
29% of the patients were alone when they died.
Duration data were available for 126 patients.
The mean survival time from the last dialysis
Table 1. Primary Reasons for Discontinuing Dialysis
Reason No. %
Chronic disease (deterioration) 81 66
Acute intercurrent disorder 27 22
Technical problems with dialysis 2 1.5
Inanition (failure to thrive) 11 9
Failed trial 2 1.5
DIALYSIS DISCONTINUATION AND PALLIATIVE CARE 141
session was 8.2 days, with half the subjects dying
within 6 days and 5 patients living between 30
and 46 days. Ten debilitated subjects survived
less than 2 days after their last treatment.
DISCUSSION
This observational study describes the charac-
teristics and terminal course of a group of pa-
tients who died after dialysis discontinuation.
The overall findings should be reassuring to staff,
patients, and families in that the terminal treat-
ment was generally satisfactory and most people
died well. The study allows us to highlight areas
that need further attention if those caring for
patients with ESRD intend to not only extend
life, but also to fulfill the promise of providing
patients with a good death.4,8 A good death may
have once been a matter of luck, but it now has
more to do with psychological preparation for
dying, medical treatment decisions, and quality
of terminal care.9 This is consistent with the
goals of palliative medicine, which seeks to
provide patients who have life-threatening ill-
nesses with the best possible quality of life and to
attend to the medical, emotional, social, and
spiritual needs of dying people. Palliative medi-
cine regards dying as both personal and natural.
Dialysis discontinuation represents a situation
that calls for maximum palliative care.
The study sample matched the profile de-
scribed in the retrospective research in that it was
elderly, white, and primarily diabetic.10-15 Pa-
tients had undergone dialysis for 3 years on
average before they arrived at the decision to
terminate life-support treatment. By that time,
they were considerably debilitated. Substantial
numbers had cardiovascular disease, inanition,
and neurological problems. Mental status was
often impaired, and only one third of the partici-
pating patients could be meaningfully inter-
viewed.
Although symptoms were common during the
last day of life, most were not severe. Pain was
present in nearly half the sample. The symptom
prevalence was not greatly different from that
reported in a variety of different clinical settings
during the last week of life.16 Despite the fre-
quency of symptoms, families and caretakers
were satisfied with the end-of-life care. The
study was successfully completed despite the
presence of a number of obstacles. Dialysis pro-
grams, patients, and staff are naturally focused
on prolongation of life, and they tend to shy
away from examining the issues of death and
dying.17 It was therefore gratifying that eight
clinics from the United States and Canada joined
together in the endeavor. We suspect that this
may have reflected the leadership of individual
nephrologists who had a particular interest in
psychosocial matters, along with a strong social
worker and psychiatrist presence in the participat-
ing dialysis programs.
Research about dying requires an appreciation
of the limited time remaining to patients and
families and an extraordinary sensitivity to pri-
vacy issues. Although the multicenter design of
the current study represents an improvement
over the pilot study, it lacked a randomized
control and the usual lengthy battery of standard-
ized tests and measures. Such study design com-
promises were apparent in all 11 palliative care
trials reviewed by Rinck et al,18 and Higginson19
has concluded that it is not the time to allow such
barriers to stand in the way of studying and
applying efficacious palliative care.
Another limitation was the variability between
sites, which were selected because of the strength
of psychosocial services and willingness to par-
ticipate. Prospective and retrospective data were
mixed to provide a more complete picture of the
population in this descriptive study. It was also
unclear who made the decision to withdraw
dialysis because this generally emerged from
discussions with the family, patient (when able),
and nephrologist. For all these reasons, the study
results should be interpreted with appropriate
caution.
It was striking that the great majority of care-
takers and families were satisfied with the end-of-
Table 2. Symptoms During the Last 24 Hours Among
79 Patients Followed Up
Symptom
Present
(%)
Severe
(%)
Pain 42 5
Agitation 30 1
Myoclonus or muscle twitching 28 4
Dyspnea or agonal breathing 25 3
Fever 20 —
Diarrhea 14 1
Dysphagia 14 —
Nausea 13 1
142 COHEN ET AL
life care; however, one may question whether
loved ones and health care providers have a need
to view such treatment as having been satisfac-
tory. Is it acceptable for nearly half the sample to
experience pain, or one third to show agitation
during the final day? Likewise, should not all
patients who discontinue dialysis have com-
pleted a health care proxy or some other form of
advance directive?
These shortcomings in the treatment of pa-
tients with ESRD can be addressed from a pallia-
tive medicine perspective.20 To begin with, a
good death after dialysis discontinuation should
be pain free, peaceful, and brief and need not be
an unfocused vision beyond reach.21 Use of qual-
ity-of-dying measures may help establish a stan-
dard of care.22 They can permit continuous qual-
ity improvement for the treatment of terminal
illness and prevention of suffering.23 Table 2 can
serve as an outline for the development of symp-
tom-based palliative care treatment protocols.
Given the high mortality rate of ESRD and
increasing number of deaths preceded by dialysis
termination, clinics should have an expectation
that every patient complete a living will and/or
designate a health care proxy. Advance care
planning that directly involves families can be
regularly scheduled and carefully documented.24
Decisions to terminate dialysis can be automati-
cally followed by steps to address clinical, so-
cial, and spiritualissues. Contact with hospice
can be facilitated, support services mobilized,
and more patients allowed or encouraged to die
at home. Wherever patients die, the dialysis staff
should retain a role in the final treatment and be
informed about the circumstances at the terminus
of life. Lastly, bereaved family and loved ones
should be provided with support and the opportu-
nity to participate in annual dialysis clinic memo-
rial services.
The nephrology community is actively devel-
oping practice guidelines to improve end-of-life
care of patients with ESRD.25 The National Kid-
ney Foundation has begun to formulate and pub-
lish excellent checklists, and the Renal Physi-
cians Association and the American Society of
Nephrology have developed practice guidelines
that specifically address the complex clinical and
bioethical issues of dialysis discontinuation.26,27
Nephrology is in the process of making the leap
from what Nelson28 calls ‘‘saving lives’’ to ‘‘sav-
ing deaths.’’ This involves the gratifying tasks of
helping patients preserve dignity and comfort
despite overwhelming disease, along with help-
ing families accept the inevitability and some-
times appropriateness of dying. Future research
efforts are needed to examine how to best inte-
grate modern palliative medicine into the dialy-
sis setting.
ACKNOWLEDGMENT
The authors thank the members of the Dialysis Discontin-
uation Study Group. They include: Henry Rose, MD, Steve
Nelson, DO, Mark Pettus, MD, Steven K. Dobscha, MD,
Richard Berlin, MD, Kathy Duquette-Penna, LICSW, and
Jack McCue, MD, of the Berkshire Medical Center, Pitts-
field, MA; M.J. Barchman, MD, Kathy Shy, MD, and Tracey
Correa of the Greenville Dialysis Center, Greenville, NC;
Dimitri Oreopoulos, MD, David Mendelssohn, MD, Jose
Mederos, MSW, and Lillian Mierzwa, BSW, of the Toronto
Hospital, Toronto, Canada; Jeffrey W. Blomstedt, MD, and
Deborah J. Hayes, LICSW, of Yankee Family Dialysis,
Greenfield, MA; Jonathan E. Morris, MD, Donald Leeber,
MD, Nancy Lord, LICSW, and Betty Jarratt, LCPC, MMH,
of the Southern Maine Dialysis Facility, Portland, ME;
Kathy Collinson, MD, and Irene James, MSW, RSW, of the
University of Alberta Chronic Renal Failure Program, Al-
berta, Canada; Kevin Hails, MD, Rasib Raja, MD, and
Marcia Goldstein, RN, MSN, of the Albert Einstein Medical
Center, Philadelphia, PA; Steven V. Fischel, MD, PhD, of
Baystate Medical Center; and Penny Pekow, PhD, of the
University of Massachusetts, Amherst, MA.
The authors also thank Jenny Kitsen, Executive Director,
and Cindy Andrzejewski, Data Manager, of the ESRD Net-
work of New England, which is funded by contract no.
500-97-EO19 from the Health Care Financing Administra-
tion.
REFERENCES
1. Cohen LM: Suicide, hastening death, and psychiatry.
Arch Intern Med 158:1973-1976, 1998
2. US Renal Data System: Excerpts From the 1998
USRDS Annual Data Report. Am J Kidney Dis 32:S1-S213,
1998 (suppl 1)
3. US Renal Data System: Excerpts From the 1997
USRDS Annual Data Report. Am J Kidney Dis 30:S1-S213,
1998 (suppl 1)
4. Emanuel EJ, Emanuel LL: The promise of a good
death. Lancet 351:S21-S29, 1998 (suppl II)
5. Cohen LM, McCue JD, Germain M, Kjellstrand CM:
Dialysis discontinuation: A good death? Arch Intern Med
155:42-47, 1995
6. Bajwa K, Szabo E, Kjellstrand CM: A prospective
study of risk factors and decision making in dialysis discon-
tinuation. Arch Intern Med 156:2571-2577, 1996
7. Sekkarie MA, Moss AH: Withholding and withdraw-
ing dialysis: The role of physician specialty and education
and patient functional status. Am J Kidney Dis 31:464-472,
1998
8. Institute of Medicine: Approaching Death: Improving
DIALYSIS DISCONTINUATION AND PALLIATIVE CARE 143
Care at the End of Life. Washington, DC, National Academy
Press, 1997
9. Webb M: The Good Death: The New American Search
to Reshape the End of Life. New York, NY, Bantam, 1997
10. Neu S, Kjellstrand CM: Stopping long-term dialysis:
An empirical study of withdrawal of life-supporting treat-
ment. N Engl J Med 314:14-20, 1986
11. Rodein GM, Chmara J, Ennis J, Fenton S, Locking H,
Steinhouse K: Stopping life-sustaining medical treatment:
Psychiatric considerations in the termination of renal dialy-
sis. Can J Psychiatry 26:540-544, 1981
12. Port FK, Wolfe RA, Hawthorne VM, Ferguson CW:
Discontinuation of dialysis therapy as a cause of death. Am J
Nephrol 9:145-149, 1989
13. Roberts JC, Kjellstrand CM: Choosing death: With-
drawal from chronic dialysis without medical reason. Acta
Med Scand 223:181-186, 1988
14. Mailloux LU, Bellucci AG, Napolitano B, Mossey
RT, Wilkes BM, Bluestone PA: Death by withdrawal from
dialysis, a twenty-year experience. J Am Soc Nephrol 3:1631-
1637, 1993
15. Moss AH: Dialysis decisions and the elderly. Clin
Geriatr Med 10:463-473, 1994
16. Foley KM: Palliative medicine, pain control, and
symptom assessment, in Caring for the Dying: Identification
and Promotion of Physician Competency. Reprint of Educa-
tional Resource Document and Personal Narratives. Philadel-
phia, PA, American Board of Internal Medicine, 1998, pp
11-26
17. Moss AH, Stocking CB, Sachs GA, Siegler M: Varia-
tion in the attitudes of dialysis unit medical directors toward
decisions to withhold and withdraw dialysis. J Am Soc
Nephrol 4:229-234, 1993
18. Rinck GC, van den Bos GA, Kleijnen J, de Haes HJ,
Schade E, Veenhof CH: Methodologic issues in effective-
ness research on palliative cancer care: A systematic litera-
ture review. J Clin Oncol 15:1697-1707, 1997
19. Higginson IJ: Evidence-based palliative care: There
is some evidence—And there needs to be more. BMJ 319:
462-463, 1999
20. DeVelasco R, Dinwiddie LC: Management of the
patient with ESRD after withdrawal from dialysis. ANNA J
25:611-614, 1998
21. Singer PA, Martin DK, Kelner M: Quality end-of-life
care: Patients’ perspectives. JAMA 281:163-168, 1999
22. McCusker J: Development of scales to measure satis-
faction and preferences regarding long-term and terminal
care. Med Care 22:476-493, 1984
23. Kenny NP: Ethical implications of human suffering.
Humane Health Care Int 13:27-30, 1997
24. Hines SC, Glover JJ, Holley JL, Babrow AS, Badzek
LA, Moss AH: Dialysis patients’ preferences for family-
based advance care planning. Ann Intern Med 130:825-828,
1999
25. Price C: Nephrology community initiatives to de-
velop guidelines for end-of-life care. ANNA J 25:573-577,
1998
26. National Kidney Foundation: Initiation or With-
drawal of Dialysis in End-Stage Renal Disease: Guidelines
for the Health Care Team. New York, NY, National Kidney
Foundation, 1996, pp 1-18
27. RPA/ASN position on quality of care at the end of
life. Dial Transplant 26:776-783, 1997
28. Nelson JE: Saving lives and saving deaths. Ann
Intern Med 130:776-777, 1999
144 COHEN ET AL