|
|
Received: 22 January 2017 Revised: 17 September 2017 Accepted: 22 September 2017 DOI: 10.1111/ajt.14522
COMPREHENSIVE REVIEW
Palliative and end of life care in solid organ transplantation K. Wentlandt1,2,3 | A. Weiss1,3 | E. O’Connor1,4 | E. Kaya1,5 1 Division of Palliative Care, Department of Supportive Care, University Health Network, Toronto, ON, Canada 2
Multi-Organ Transplant Program, University Health Network, Toronto, ON, Canada 3
Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada 4
Division of Emergency Medicine, Department of Medicine, University of Toronto, Toronto, ON, Canada 5
Division of Medical Oncology, Department of Medicine, University of Toronto, Toronto, ON, Canada Correspondence Kirsten Wentlandt Email:
[email protected] Funding information Dr. Kirsten Wentlandt is supported by a Department of Family and Community Medicine Investigator Award.
Palliative care is an interprofessional approach that focuses on quality of life of patients who are facing life-threatening illness. Palliative care is consistently associated with improvements in advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower healthcare utilization. Most transplant patients have advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well-suited to support these patients and their caregivers, yet access to palliative care and research within this population are lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure and transplant populations. A proposed model to provide palliative care in parallel with disease-directed therapy in a transplant program has the potential to improve symptom burden, quality of life, and healthcare utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is a tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease. KEYWORDS
models of care, palliative care, quality of life, symptom management, transplantation
1 | DEFINING PALLIATIVE CARE
Dr. Mount went on to develop the first comprehensive, hospital- based service that included an inpatient ward, consultation service,
The World Health Organization (WHO) defines palliative care as: “An
home care program, and bereavement support service under the title
approach that improves the quality of life of patients and their families
“Palliative Care,” with a goal to provide noncurative therapy aimed at
facing the problems associated with life-threatening illness, through
improving patient quality of life. Although the terms “hospice” and
the prevention and relief of suffering by means of early identification
“palliative care” are often used interchangeably, it is important to note
and impeccable assessment and treatment of pain and other problems,
the difference, particularly in the United States. Hospice in this con-
physical, psychosocial and spiritual.”1 This definition reflects the ex-
text is focused on care of patients at the end of life, whereas palliative
panding role of palliative care, which includes not only end of life (EOL)
care has a wider scope of care and includes symptom management and
care, but also aggressive symptom management and optimization of
support of quality of life earlier in the disease trajectory.
quality of life even when cure remains the intention of treatment.
Palliative care can address a broad range of issues while integrat-
In 1975, Dr. Balfour Mount of Montreal, Canada, first used the
ing patient and family specific needs and goals into care. These may
term “palliative care” to denote patient care focused on symptoms.2
include optimal management of physical symptoms, psychological distress, patient care plans, and care coordination. The role and potential
Abbreviations: CI, confidence interval; COPD, chronic obstructive pulmonary disease; DNR, do not resuscitate; EOL, end of life; FEV1, forced expiratory volume in the first second; ICU, intensive care unit; RCT, randomized control trial; RR, relative risk; SE, standard error; UK, United Kingdom; US, United States; VAD, ventricular assist device; WHO, World Health Organization.
benefits of palliative care are summarized in Table 1. Specialized palliative care is delivered by interprofessional teams in numerous settings including outpatient clinics, hospital based teams, specialized hospital
3008 | amjtransplant.com © 2017 The American Society of Transplantation and the American Society of Transplant Surgeons
Am J Transplant. 2017;17:3008–3019.
|
3009
WENTLANDT et al.
T A B L E 1 The role and potential benefits of palliative care Role of palliative care
Potential benefits of palliative care
Palliative care can address a broad range of issues while integrating patient and family specific needs and goals into care. These may include optimal management of: Physical symptoms: Most patients with chronic end-organ disease have a high symptom burden including symptoms such as dyspnea, insomnia, pain, nausea, and fatigue. Psychological distress: This may include the management of depression, anxiety, or help to support patients and families cope with illness and fear. Exploration of patient’s spiritual beliefs and values is needed to inform patient’s goals of care. Care plan: Clarification of illness understanding and advance care plan are important to ensure patient-centered care. Care coordination: This may also include the coordination of care providers, social supports, and community services
Research evidence demonstrates that palliative care: Improves patient symptom burden Improves quality of life Improves illness understanding Improves patient and caregiver satisfaction with care Decreases aggressive care at end of life Increases hospice use at end of life Decreases healthcare utilization and costs
units, residential hospices, and community home-visiting teams. In
the end of life for patients with lung cancer and increase enrollment
Canada and the United Kingdom, palliative care is available through
and length of stay in hospice, while improving survival.11 Palliative
public healthcare plans. In the United States, many health mainte-
care has demonstrated improvements in satisfaction with care and
nance organizations and private insurance companies offer coverage
lower stress and depression scores in caregivers.16,17 Randomized tri-
for palliative care services. In addition, Medicare offers hospice ben-
als appear to suggest that the full benefits of palliative care are more
efits, and the extra Medicare plan (Part B) offers some palliative care
likely to be achieved through continuity with a multidisciplinary pal-
benefits. Medicaid coverage will also provide palliative care for people
liative care team for at least 3-4 months. It is important to note that
with limited income, but this can vary by state.
these trials and qualitative analyses indicate that no adverse outcomes
The field of palliative care medicine has grown tremendously in the
resulted from early palliative care involvement.9,18,19
last decade. Hospice and palliative medicine is now an established specialty of medicine through the American Board of Medical Specialties with 10 co-sponsoring medical specialties reflecting the truly multidisciplinary field.3 Palliative care has also moved beyond an initial focus
3 | PALLIATIVE CARE IN ADVANCED ORGAN FAILURE
on patients with cancer to include care for those with chronic, nonmalignant disease such as severe respiratory, cardiac, renal, and hepatic
Traditionally, palliative care has been associated with cancer popula-
diseases.4-7 The field of palliative care research has grown exponen-
tions, even though patients with advanced chronic disease experi-
tially, and the data to support palliative care intervention have grown
ence similar levels of fatigue, depression, pain, breathlessness, and
along with it. A recent systematic review looking at the association be-
anxiety and often have a worse quality of life.20-24 These patients
tween palliative care and patient outcomes identified 43 randomized
have little access to palliative care and referral to palliative care usu-
control trials (RCTs) that provided data on 12 731 patients and 2479
ally occurs much later in their disease trajectory. One population-
caregivers.8 Palliative care was consistently associated with improve-
based cross-sectional study in England between 1993 and 2012
ments in advance care planning, patient and caregiver satisfaction, and
showed that noncancer deaths still account for only 5% of all deaths
lower healthcare utilization. In this meta-analysis, palliative care inter-
in hospices despite the numbers improving over the decade studied.25
ventions were associated with improvements in patient quality of life
These numbers are mirrored in a retrospective audit from Australia,
and symptom burden. Another recent systematic review indicated that
where despite the clear increase in noncancer patients accessing pal-
patient survival is not compromised by referral to hospice or a focus
liative care services, 69% of cancer patients accessed palliative care
on palliative care.9
in the last year of life, compared to only 14% of noncancer patients.26 Ultimately, patients are more likely to receive better care, to die at
2 | THE EVIDENCE TO SUPPORT THE INTEGRATION OF PALLIATIVE CARE IN CANCER CARE
home, or be admitted to a specialist palliative care unit if they have a cancer diagnosis.27-30 There are many factors and barriers that contribute to poor palliative care integration into organ failure disease management. These include the disease trajectory of organ failure and its unpredictable
Palliative care has become a paradigm for the treatment of cancer
course; misconceptions of palliative care among patients, families, and
in oncology.10 Recent randomized control trials provide compelling
clinicians; and lack of advance care planning discussions.29-31 Because
evidence in support of early palliative care on various patient out-
of these barriers, research to support palliative care intervention in
comes.11-15 Robust evidence from multiple large clinical trials now
these populations is still in development. Nevertheless, palliative care
confirm that early palliative care improves quality of life, reduces de-
is thought to be integral to the management of advanced disease,
pression, and improves satisfaction with care in cancer populations. In
as defined by consensus guideline recommendations for advanced
addition, early palliative care can reduce the use of chemotherapy near
heart,32-34 lung,35,36 liver,23,37 and renal failure.38,39
|
WENTLANDT et al.
3010
In 2004, a consensus conference was convened to define the cur-
intervention in an intensive care unit (ICU) and 2 studies outlining pal-
rent state of and important gaps in knowledge and needed research
liative care co-management of patients affiliated with a liver transplant
on palliative and supportive care in advanced heart failure.32 The con-
program.52-54 These papers are reviewed in the next section.
ference identified gaps in current knowledge, practice, and research
Evidence demonstrates that advanced renal disease is associated
relating to prognostication, symptom management, and support-
with a high symptom burden and significant healthcare utilization at
ive care for advanced heart failure. In recognition of this, palliative/
end of life.55-57 Most patients with end-stage kidney disease die in the
hospice care referral was recommended for end-stage heart failure
hospital, but patients managed without dialysis are significantly more
(Level of Evidence 1A) in the 2005 American College of Cardiology/
likely to die outside of hospital and be referred for palliative care.58,59
American Heart Association heart failure guidelines.
40,41
A retrospective analysis was conducted of dialysis patients who died
Recently a systematic review was conducted looking at pallia-
between January 1, 2001, and December 31, 2002 using the US
tive care interventions in the heart failure population.5 Of the 15
Renal Data System. Hospice claims from the Centers for Medicare &
identified studies, 10 were prospective and were 5 retrospective in
Medicaid Services were examined to measure prevalence, factors, and
design. Most studies measuring patient-centered outcomes demon-
costs that were associated with dialysis withdrawal and hospice use.
strated improvements including patient quality of life and satisfaction.
Among patients who withdrew from dialysis and used hospice, median
Quality-of-death outcomes were mixed, with most studies reporting
cost of per-patient care during the last week of life was $1858, com-
clarification of care preferences, but less improvement in death at
pared with $4878 for nonhospice patients (P
