PSYCHOSOCIAL FACTORS IN PATIENTS WITH CHRONIC KIDNEY DISEASE

Palliative Care in End-Stage Renal Disease: Focus on

Blackwell Publishing, Ltd.

Advance Care Planning, Hospice Referral, and

Bereavement
Jean L. Holley
Department of Medicine, Nephrology Division, University of Virginia Health System, Charlottesville, Virginia

ABSTRACT

The components of palliative care in end-stage renal disease allows a patient to achieve control over his or her life. It is
(ESRD) include pain and symptom management, advance care incumbent upon dialysis care providers to include advance
planning, psychosocial and spiritual support, and ethical issues care planning in overall care plans for their patients. Factors
in dialysis. End-of-life care is not synonymous with, but rather contributing to the failure of advance care planning in ESRD
a subset of palliative care. Advance care planning occurs within patients will be discussed, as will hospice and ESRD, and
the patient-family relationship and is a dynamic process that opportunities for bereavement programs.
prepares for death, strengthens interpersonal relationships, and

For many, “palliative care” may be synonymous prevention and relief of suffering by means of early
with end-of-life care. However, contemporary models identification and impeccable assessment and treatment
emphasize that most health care delivered to patients of pain and other problems, physical, psychosocial, and
with chronic diseases is actually palliative care (Fig. 1). spiritual” (1).
Cure is not an option in chronic diseases, so restorative Palliative care in ESRD is poorly taught (2), and until
or palliative care is the focus and begins early in the course recently had attracted the attention of only a few centers
of chronic illness. Managing symptoms and educating (3). Recent society-endorsed guidelines (4) and national
and supporting patients and their families is the basis of workshop-sponsored publications (5) have raised the
palliative care. profile of palliative care in the nephrology community.
As outlined in the core curriculum in palliative care, Articles in this journal address some ESRD palliative care
the components of renal palliative care are pain and issues, including management of symptoms and psycho-
symptom management, advance care planning, psycho- social and spiritual support of the patient and his or her
social and spiritual support of patients and families, family, pain and sleep, and sexual dysfunction. This article
and ethical issues in dialysis decision-making (1). Thus discusses three aspects of palliative care—advance care
palliative care is not synonymous with end-of-life care; planning, hospice referral, and bereavement support—
rather, end-of-life care is a subset of palliative care. As and offers suggestions for dialysis units to incorporate
shown in Fig. 1, palliative care in chronic kidney disease these aspects of palliative care into overall patient care
includes but is not limited to blood pressure control, plans.
anemia management, treatment of cardiovascular risk
factors, evaluation and treatment of disorders of bone and
mineral metabolism, as well as advance care planning. Advance Care Planning
Similarly the treatment of end-stage renal disease (ESRD)
patients focuses on the symptoms and effects of ESRD- Advance care planning is a process of communication
related complications and therefore is also best described among patients, families, health care providers, and other
as palliative care. The World Health Organization defines important individuals about the patient’s wishes for
palliative care as “an approach that improves the quality end-of-life care (6,7). These discussions prepare a patient
of life of patients and their families facing the problems and his or her family for death, but also allow a patient to
associated with life-threatening illness, through the achieve control over his or her health care, relieve potential
burdens on loved ones, and strengthen interfamily
relationships (6,7). The traditional focus of advance care
Address correspondence to: Jean L. Holley, MD, Nephrology
Division, University of Virginia Health System, Box 800133, planning was the completion of written advance direc-
Charlottesville, VA 22908, or e-mail: jlh4qs@virginia.edu. tives such as a living will or a document naming a health
Seminars in Dialysis —Vol 18, No 2 (March–April) 2005 care proxy or surrogate decision-maker. Patients and
pp. 154–156 families have taught us that completing written advance

Address correspondence to: Jean L. Holley, MD, Nephrology Division, University of Virginia Health System, Box 800133, Charlottesville, VA 22908, or e-mail: jlh4qs@virginia.edu.
154
 PALLIATIVE CARE IN ESRD
Fig. 1. The chronic disease model, adapted from the Sheffield model
of chronic disease.
directives is only one small part of the advance care
planning process. Contemporary views recognize that
advance care planning is an ongoing, dynamic process
addressing the overall health care of an individual and
his or her family (6,7).
Like other patients with end-stage organ failure, ESRD
patients generally experience progressive physical decline
punctuated by episodes of life-threatening exacerbations
and complications (6,7). Dialysis patient care plans should
therefore address the potential that ongoing survival with
progressive disability and increasing risk for death is as
likely as dying (6). Advance care planning is therefore
best accomplished early and throughout the course of
chronic kidney disease. Advance care planning is as
relevant to the overall care plan for a dialysis patient
as access and anemia management, attaining adequate
clearance, bone and mineral metabolism, etc.
At best, only 30% of dialysis patients complete written
advance directives (7,8), yet nearly 80% of patients dis-
cuss their wishes for end-of-life care with their families
(9,10). The general failure of advance care planning among
chronic dialysis patients results in part from our misun-
derstanding of the purpose of advance care planning. In
addition, incorrectly assuming that advance care planning
occurs within the patient-physician (rather than the patient-
family) relationship and that advance directives should
address interventions (cardiopulmonary resuscitation,
ventilation, etc.) rather than acceptable health states are
factors contributing to the failure of advance care plan-
ning (1,11).
It is now clear that advance care planning occurs within
the patient-family relationship (9) and that focusing
on health states (coma, dementia, “In what state would
living be unacceptable to you?”) and not treatment
interventions is important to assess a patient’s desires for
end-of-life care (1,6,7,11). The role of the health care
provider in the advance care planning process is prima-
rily one of introducing the topic and encouraging patients
and families to discuss the salient issues (6,7,9). The
success or failure of advance care planning within a
dialysis unit will also depend in part on the interest and
abilities of the dialysis providers to engage in advance
care planning discussions.
Dialysis providers’ participation in discussions of
end-of-life care depends on perceived roles, time, lack
of training, and, importantly, personal experience (12).
155
Involving individuals who are comfortable discussing
end-of-life topics (12,13) and encouraging providers to
learn communication skills useful in end-of-life discus-
sions (14,15) should facilitate the incorporation of advance
care planning into overall care plans for dialysis patients.
Opportunities to engage in discussions about a patient’s
wishes for end-of-life care and requirements for mean-
ingful living include any routine assessment of a patient’s
problems.
Advance care planning discussions should be con-
sidered whenever the health care provider would not be
surprised if that patient died within the next 12 months
(6,14). The topic of wishes for end-of-life care can be
introduced whenever providers are discussing prognosis,
treatments with a low probability of success, or during
routine visits with appropriate patients (6,7,14). The
language used to open such discussions can be positive
(“I want to ensure you receive the kind of treatment you
want”), reassuring (“Your comfort and dignity is my top
priority”), and an invitation to communicate and educate
(“How much do you want to know?” and “How specific
do you want me to be?”) (1,14,15). By discussing end-
of-life care, advance care planning can be incorporated
into the overall care plan of each dialysis patient and
updated over time as circumstances and changes in
health warrant.
Hospice and ESRD
Although withdrawal from dialysis may precede death
in up to 30% of chronic dialysis patients (1,3), hospice is
rarely utilized by ESRD patients (1,3,16). In the Baystate
Medical Center Renal Palliative Care Initiative, hospice
was involved in less than 10% of dialysis patient deaths
(3). Hospice emphasizes supportive care of the patient
and family, provides for home nursing and pastoral care,
and focuses on treating symptoms while neither prolong-
ing life nor hastening death (1,17).
Hospice is underutilized by the ESRD population
primarily because of the Medicare payment structure for
ESRD and hospice. A prognosis of less than 6 months is
required to be admitted to hospice programs (1,17). If a
chronic dialysis patient withdraws from dialysis, he or
she would immediately be a candidate for hospice care.
However, if dialysis is continued, hospice care is possible
only if a non-ESRD diagnosis exists. Since hospice is
covered by Medicare and the hospice program coordinates
and pays for all services related to the patient’s terminal
condition, if dialysis is continued, the hospice program
would be responsible for the dialysis treatment payments
(1,17). Hospice programs cannot afford this expense.
Thus in some cases, if a patient has an alternate terminal
diagnosis, for example, carcinoma or end-stage acquired
immune deficiency syndrome (AIDS), dialysis treatments
and hospice care can be simultaneously provided. How-
ever, in the absence of a terminal condition other than
ESRD, continuing dialysis will make a patient ineligible
for hospice.
Referral to hospice should be considered for any
chronic dialysis patient who withdraws from dialysis,
any ESRD patient who refuses to initiate dialysis and is
156 Holley
expected to live less than 6 months, and any dialysis
patient with a nonrenal terminal disease, a prognosis of
less than 6 months, and the desire to continue dialysis.
Home hospice programs are available in most areas. Some
in-hospital hospice programs are also available, and most
will accept dialysis patients who have withdrawn from
dialysis and/or have a nonrenal terminal diagnosis. The
long-term relationships between dialysis care providers
and patients dictates that dialysis care providers will
usually continue to interact with and support patients and
families even when dialysis has been withdrawn.
Bereavement Care and Services
After the death of an ESRD patient, dialysis providers
often continue to be the source of psychosocial and
spiritual support of the patient’s families and loved ones.
Most dialysis units formally recognize the death of a
patient for the benefit of other patients as well as dialysis
unit staff. Notification of a patient’s death may be through
display of an obituary or a ritual such as placing a flower
in the deceased patient’s chair (1). Letters or condolence
cards are often sent from the nephrologists and/or dialysis
unit, and some staff may choose to attend wakes or funeral
services. Annual memorial services may be held by some
dialysis programs (1,3). Family members, dialysis staff,
those involved in transporting patients, and others involved
in the lives of dialysis patients may be invited. Renal social
workers may be invaluable in organizing memorial
programs that may serve as an acknowledgment of the
role of the dialysis unit in the ESRD community, not
only for patients, but also for families and staff.
Conclusion
Renal palliative care encompasses not only end-of-life
care, but also the health care that precedes the initiation
of dialysis as well as care of the family and staff follow-
ing the death of a dialysis patient. Palliative care actually
begins with the diagnosis of chronic kidney disease and
includes pain and symptom management, advance care
planning, psychosocial and spiritual support of the ESRD
patient and his or her family and loved ones, and ethical
issues in dialysis decision-making (1). By incorporating
advance care planning in the overall care plan for an
ESRD patient, we can improve the lives and deaths of
dialysis patients and their families. Asking patients how
they want to live will help us to understand how they prefer
to die and will provide insight into prioritizing their health
care using the palliative care model.
References
1. Moss AH, Holley JL, Davison SN, Dart RA, Germain MJ, Cohen L, Swartz RD:
Core curriculum in nephrology: palliative care. Am J Kidney Dis 43:172–
185, 2004
2. Holley JL, Carmody SS, Moss AH, Sullivan AM, Cohen LM, Block SD,
Arnold RM: The need for end-of-life care training in nephrology: national
survey results of nephrology fellows. Am J Kidney Dis 42:813 – 820, 2003
3. Braveman C, Cohen LM: Discontinuation of dialysis: the role of hospice and
palliative care. AAHPM Bull 3:16 –17, 2002
4. Renal Physicians Association and American Society of Nephrology: Shared
Decision-Making in the Appropriate Initiation of and Withdrawal from Dia-
lysis: Clinical Practice Guideline: 2. Washington, DC: Renal Physicians
Association, 2000
5. End-Stage Renal Disease Peer Workgroup of the Robert Wood Johnson
Foundation’s Promoting Excellence in End-of-Life Care National Pro-
gram: Completing the continuum of nephrology care. Available at http://
www.promotingexcellence.org/esrd; accessed Feb. 9, 2004
6. Lynn J, Goldstein NE: Advance care planning for fatal chronic illnesses:
avoiding commonplace errors and unwanted suffering. Ann Intern Med
138:812–818, 2003
7. Singer PA: Advance care planning in dialysis. Am J Kidney Dis 33:688 –693,
1999
8. Holley JL, Stackiewicz L, Dacko C, Rault R: Factors influencing dialysis
patients’ completion of advance directives. Am J Kidney Dis 30:356–360,
1997
9. Hines SC, Glover JJ, Holley JL, Babrow AS, Badzek LA, Moss AH: Dialysis
patients’ preferences for advance care planning and end-of-life decision
making. Ann Intern Med 130:825 – 828, 1999
10. Holley JL, Hines SC, Glover JJ, Babrow AS, Badzek LA, Moss AH: Failure
of advance care planning to elicit patients’ preferences for withdrawal from
dialysis. Am J Kidney Dis 33:688 – 693, 1999
11. Holley JL: Advance care planning in elderly chronic dialysis patients. Int
Urol Nephrol 35:565 –586, 2003
12. Perry E, Swartz R, Wheelock-Smith L, Westbrook J, Buck C: Why is it dif-
ficult for staff to discuss advance directives with chronic dialysis patients? J
Am Soc Nephrol 7:2160 –2168, 1996
13. Perry E, Swartz J, Kelly G, Brown SL, Swartz RD: Palliative care in chronic
kidney disease: peer mentoring program personalizes advance directives dis-
cussions. Nephrol News Issues 17:28 –31, 2003
14. Quill TE: Initiating end-of-life discussions with seriously ill patients:
addressing the “elephant in the room.” JAMA 284:2502–2507, 2000
15. Buckman R: How to Break Bad News: A Guide for Health Care Profession-
als. Baltimore, MD: Johns Hopkins University Press, 1992
16. Holley JL: A single-center review of the death notification form: discontinu-
ing dialysis before death is not a surrogate for withdrawal from dialysis. Am
J Kidney Dis 40:525 –530, 2002
17. National Hospice and Palliative Care Organization: Hospice and palliative care
information: Available at http://www.nhpco.org; accessed February, 9, 2004