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Palliative Care Research: Issues and Opportunities

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Robert S Krouse at The University of Pennsylvania
Robert S Krouse
  • The University of Pennsylvania
Ken Rosenfeld at Sutter Health
Ken Rosenfeld
Marcia Grant at City of Hope National Medical Center
Marcia Grant
Noreen M Aziz at U.S. Department of Health and Human Services
Noreen M Aziz
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Editorial
Palliative Care Research: Issues and Opportunities
Robert S. Krouse,
1
Kenneth E. Rosenfeld,
2
Marcia Grant,
3
Noreen Aziz,
4
Ira Byock,
5
Jeffrey Sloan,
6
and David Casarett
7
1
Department of Surgery, Southern Arizona Veterans Affairs Health Care System and the University of Arizona, Tucson, AZ;
2
Department of
Medicine, West Los Angeles Veterans Affairs Health Care System and the University of California at Los Angeles, Los Angeles, CA;
3
Department of Nursing Research and Education, City of Hope National Medical Center, Duarte, CA;
4
Office of Cancer Survivorship, Division
of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD;
5
Section of Palliative Medicine, Dartmouth-Hitchcock
Medical Center, Hanover, NH;
6
Statistics Unit, Mayo Cancer Center, Rochester, MN;
7
Center for Health Equity Research and Promotion,
Philadelphia Veterans Affairs Medical Center and Division of Geriatrics, University of Pennsylvania, Philadelphia, PA
Introduction
Supportive and palliative care has been recognized as an
important component of quality care for all cancer
patients and particularly for those with advanced or
incurable disease (1, 2). Given an estimated 1,334,100
new patients diagnosed with cancer in the United States
in 2003 (excluding nonmelanoma skin cancers) and
f
556,500 cancer-related deaths (3), care for those
patients who are near the end of life is an essential
aspect of cancer care (4). Cancer survivorship research
focuses on the life of individuals diagnosed with, and
living with, the late or long-term effects of cancer and its
treatments. By definition, survivorship research also
includes studies focusing on patients with advanced
disease.
Palliative care is an interdisciplinary team approach to
care with a focus on comfort and quality of life rather
than prolongation of ‘‘cure’’ for a patient and their loved
ones. Although many treatments currently exist to
manage symptoms and complications of advanced
cancer, there continues to be a paucity of well-designed
prospective clinical trials examining state-of-the-art
practices, impeding the further development of evi-
dence-based guidelines. The absence of an established
evidence base in many areas of palliative care is at least
in part due to major challenges investigators face in
designing palliative care trials. Research challenges
include ethical issues in conducting such trials, barriers
to collaborative research across specialties, and unclear
standards for the types of ‘‘best care’’ practices that
should be employed as part of such trials (5, 6). Con-
sequently, the young specialty of palliative medicine is
struggling to develop an evidence base commensurate
with that of other specialties, threatening its credibility
within the academic arena. In other words as stated by
Casarett (7), ‘‘As long as the randomized controlled trial
is the standard by which effectiveness is judged, the field
whose interventions have not been proven by this test is
at risk of being relegated to second-class status in the
medical hierarchy.’’
In the absence of a firm evidence-based foundation for
clinical practice, care for patients with incurable cancer
is frequently based on anecdotal evidence and provider
experience. Some treatment opportunities may be
delayed or never considered at all, and other non-
beneficial and burdensome interventions may be insti-
tuted. Regardless of whether the resulting bias is one of
overtreatment or undertreatment, optimal care of pa-
tients with advanced illness requires a commitment to
base treatment approaches on scientific fact rather than
anecdotal experience. The National Cancer Policy Board
(1) recently agreed, noting that research addressing the
needs of patients with incurable cancers is severely defi-
cient. Increasing research for this population, however,
requires more complete description of the specific me-
thodological and ethical barriers in the realms of pal-
liative and end-of-life care as well as expert consensus on
approaches to developing research strategies and design.
Dilemmas and Barriers
Palliative care researchers must confront distinctive
ethical dilemmas and barriers that extend far beyond
those of standard research trials (8). While many ethical
issues are not unique to patients facing life’s end, they are
often magnified in this population and compound the
potential ethical issues present in all clinical research
trials. These include the vulnerability of the population
from which study subjects are recruited, high rates of
mental incapacity and emotional distress creating chal-
lenges to informed consent, addressing conflicts of
interest within the dual roles of the clinician-researcher,
the invasiveness and increased frequency of testing rela-
tive to standard clinical practice, and questions of
scientific value that must balance the benefits and
burdens of unproven interventions in a population in
whom comfort may be a priority. Ethical concerns specific
to palliative research include the difficulty in assessing
the risks and benefits of research participation, random-
ization, especially if there is a ‘‘no treatment arm,’’ and
the unstable mental status of patients with difficulty
assessing capacity. Methodological challenges include
high rates of loss to follow-up due to physical and mental
incapacity and death, the biases introduced by the
need for surrogate respondents, and the difficulty of
The costs of publication of this article were defrayed in part by the payment of page
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Requests for reprints: Robert S. Krouse, Southern Arizona Veterans Affairs Health
Care System, Surgical Care Line, 2-112, Tucson, AZ 85723. Phone: (520) 792-1450
ext. 6145; Fax: (520) 629-4603. E-mail: robert.krouse@med.va.gov
Cancer Epidemiology, Biomarkers & Prevention 337
Cancer Epidemiol Biomarkers Prev 2004;13(3). March 2004
determining appropriate outcomes and methods for
assessing those outcomes. Within palliative surgery and
other invasive specialty areas, specific concerns include
the risks of major morbidity and mortality these treatment
approaches entail, patient loss of decision-making capac-
ity and management of life-threatening emergencies in
the periprocedure period, difficulty with equipoise (9)
when faced with vastly different treatment options
(surgical versus nonsurgical), and the ‘‘all-or-nothing’’
nature of surgery making irrelevant the idea that a patient
should be free to withdraw from a study at any time.
Despite the challenges alluded to above, the effective-
ness of palliative interventions must nevertheless be
assessed with the same rigor that is employed in
assessing other medical interventions. As with all treat-
ments of uncertain benefit, we must ‘‘overcome ethical
objections to research and ingrained beliefs in established
treatments’’ (10). While palliative surgery poses some
unique dilemmas within the larger scope of palliative
care research, even these barriers can usually be
overcome with well-constructed studies carried out by
thoughtful research teams (11, 12). Indeed, the method-
ological difficulties in palliative care research are all
surmountable through existing techniques and appro-
priately careful scientific design (13). Communication
that these hurdles can be surmounted remains a barrier
to the implementation in palliative care settings.
In addition to the challenges described above, design-
ing palliative care research with methodological preci-
sion must account for the diversity of ethnic, cultural,
and religious backgrounds that patients bring with them
into their experience of life-limiting illness. A patient’s
experience of illness is both multidimensional—incorpo-
rating physical, emotional, social, and spiritual dimen-
sions—and culture dependent, in that the experience is
shaped in large part by the cultural milieu in which the
patient resides. Researchers have identified deficiencies
in the access of racial and ethnic minorities to palliative
care services (14), suggesting important opportunities for
palliative care research to identify the unique perspec-
tives and service needs of culturally diverse populations.
Opportunities
The dearth of high-quality clinical research in palliative
care relative to other, nonpalliative clinical conditions
(15) suggests a clear opportunity to advance the science,
and improve the quality of care, for patients afflicted
with cancer. At the same time, those interested in
pursuing palliative care research could benefit from
expert assistance in developing methods for the conduct
of palliative care trials that will maximize the chance for
trial results to be valid, safe, and ethical. Without such
advancements in research methods, policies, and proce-
dures, the field of palliative care risks a future where
clinical practices are ill informed, where research may be
suboptimally conducted, and, ultimately, where patients
will suffer less than optimal care.
Because the goal of the National Cancer Institute, as
outlined by Director Andrew C. von Eschenbach, MD, is
to relieve suffering and death related to cancer by 2015, it
implies an imperative to address immediately the needs
of those patients suffering from the effects of cancer or its
treatment. To ensure that these patients receive the best
possible care, we must determine the optimal treatment
regimens. As with all cancer therapies, the gold standard
continues to be the randomized prospective clinical trial.
This goal has admirably been pursued with regard to
cancer trials, which focus on cure; it is urgently needed in
the palliative care of patients with advanced cancer and
terminal disease.
Future Directions
In response to the current deficiencies in clinical palliative
care research, in November 2004, an international con-
sensus conference will convene in Pasadena, CA to ad-
dress methodological issues in this area. The conference’s
primary goal is to develop a ‘‘road map’’ for meeting the
challenges of developing a palliative care evidence base
and will specifically address the following objectives:
1. Use the clinical dilemma of malignant bowel obstruc-
tion (MBO) as a model to explore clinical, research,
ethical, and cultural barriers to prospective studies of
patients with advanced cancer;
2. Develop an integrated methodological framework for
the implementation of prospective randomized studies
of patients with advanced cancer;
3. Apply integrative palliative care research methods and
an implementation framework to a prospective ran-
domized trial for patients with MBO; and
4. Disseminate methodologies and implementation strat-
egies for use by researchers and clinicians working
with patients who have advanced cancer.
Conference organizers selected MBO as a target
condition given that it is a relatively common complica-
tion of advanced cancer (16, 17) causing significant
morbidity and mortality. A wide range of treatment
options currently exists for MBO, including surgical,
endoscopic, and medical approaches, without a single
dominant standard of care. Although invasive manage-
ment approaches are often considered in patients who
may regain an acceptable quality of life for at least a
period of time, decision-making remains complex and
must account for a wide range of patient and caregiver
preferences and significant variation in cross-cultural
values, attitudes, and preferences toward end-of-life care.
In addition, in cases of MBO, there is often substantial
uncertainty associated with both the risks of surgical
intervention in an individual patient and a patient’s
survival expectancy with or without surgery. Experts in
the fields of palliative medicine, quality of life research,
surgical oncology, gastroenterology, intercultural
issues, and patient advocacy are committed to this
conference, for which the findings will be disseminated
to researchers, clinicians, and policymakers who care for
those facing the end of life.
In addition to the stated objectives of this meeting,
there are many other research questions that can also be
examined based on the guidance from this meeting, such
as the following:
1. What is the appropriate management of malignant
ascites?
Palliative Care Research: Issues and Opportunities338
Cancer Epidemiol Biomarkers Prev 2004;13(3). March 2004
2. For tumor-related breast cancer wound complications,
will major resection and reconstruction be an improve-
ment in quality of life versus local wound care and
pain management?
3. For recurrent rectal cancer, what is the best manage-
ment of pain control between systemic, epidural,
nerve ablation, or resection?
4. What is the most rational approach to invasive
esophageal tumors?
Based on the consensus findings of this meeting,
conference organizers hope to provide guidance to
prospective palliative care researchers, which ultimately
should advance scientific knowledge in the care of
patients near the end of life. Once clear guidelines for
palliative care trials are available, the possible research
questions and studies are unlimited. This will ulti-
mately place palliative research and care on the same
level as those directed at a cure for patients with
cancer.
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... ACP is a process of discussions between a patient, their family and healthcare professionals to clarify values, treatment preferences and goals of end-of-life care [12]. In a variety of settings, ACP is associated with important benefits, including reduced hospitalisations increased uptake of palliative care services, improved quality of life, decreased anxiety and depression among family members, and care that is more in keeping with patient preferences [13][14][15][16][17]. Consequently, ACP is widely recommended for patients with ESKD [18][19][20]. ...
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  • BMC Nephrol
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... 15 An assessment of needs at the initial palliative encounter is therefore paramount, yet there are no guidelines or evidence-based standards for this critical aspect of care. Without evidence to guide PC practice, healthcare providers often defer to anecdotal or professional experience, 16 which ultimately undermines equitable and comprehensive patient care. 17 18 Clearly, a better approach to the comprehensive assessment of PC needs is urgently required, using evidence-based methods that are supported by standards of high-quality cancer care. ...
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Full-text available
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Full-text available
  • Jul 2018
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Palliative care interventions in advanced dementia
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ALOIS contains records of clinical trials identified from monthly searches of several major healthcare databases, trial registries and grey literature sources. We ran additional searches across MEDLINE (OvidSP), Embase (OvidSP), four other databases and two trial registries on 7 October 2020 to ensure that the searches were as comprehensive and as up-to-date as possible. Selection criteria: We searched for randomised (RCTs) and non-randomised controlled trials (nRCTs), controlled before-and-after studies and interrupted time series studies evaluating the impact of palliative care interventions for adults with advanced dementia of any type. Participants could be people with advanced dementia, their family members, clinicians or paid care staff. We included clinical interventions and non-clinical interventions. Comparators were usual care or another palliative care intervention. We did not exclude studies based on outcomes measured. 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Community Palliative Care in Spain: The Critical Role of Nursing in Its Development
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Palliative care is one of the greatest challenges in managing care for cancer patients. In Spain, during the second decade of the twenty-first century, the arrival of new treatments and surgical techniques and more precise tools for diagnosis and prognosis and the great development of anti-tumoral products have given patients new perspectives about the evolution of their disease and have improved patient’s quality of life. This chapter presents the current situation in Spain, some history of the different models of implementation, and how they have been adapted at various geographical autonomies. It describes how Spain has ameliorated the palliative care services in the community, in part by the National Health System’s response to palliative patients’ needs. Palliative care nurses have been vital in the development of better and more equitable care for patients, from the beginning of their illness to the end-of-life stage. The next step toward Spain achieving success in this field is to apply a complete palliative care program in the community.
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Cancer Survivorship
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  • Sep 2019
Survival from cancer has improved dramatically over the past three decades due to advances in early detection, adjuvant therapeutic strategies, and widespread use of combined treatment modalities including surgery, chemotherapy, and radiotherapy. Unfortunately, these modalities are associated with a spectrum of acute and chronic adverse effects that range from minor and treatable to serious and, occasionally, lethal. In addition, cancer survivors may be at risk for secondary neoplasms due to genetic predispositions or mutagenic effects of therapy, and require close monitoring. In this chapter, we will address issues that may arise in cancer survivors and problems that patients may experience with specific disease sites. Survivorship care is a rapidly growing field, and resources should be dedicated towards researching improving medical care in this increasingly large group of patients.
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Does the Distinctiveness of Palliative Care Research Require Distinct Ethical Guidelines?
Article
Full-text available
  • Jun 2017
https://doi.org/10.21860/j.8.1.2 Palliative and end of life care is changing, becoming more widespread and improving for patients. Yet, the current literature in the field suggests that the evidence for palliative and end of life care is somewhat limited. Research on treatment decisions, family care, and advance directions are just a few of the areas that need rigorous research efforts. Palliative care research is essential in order to continue providing effective treatments to those suffering in the last stages of life. Indeed, the goal of good palliative care research is to relieve suffering and to improve quality of life. Similar to any other field, palliative care programs must develop on a research base, and patient care will suffer if it is not backed by sound research. However, weighted against this need are some who maintain that the ethical and practical challenges of palliative care research are unique and insurmountable. This analysis considers if distinct ethical guidelines are needed for palliative care research.
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Cancer care during the last phase of life
Article
  • May 1998
Executive Summary: The American Society of Clinical Oncology (ASCO) believes that it is the oncologists' responsibility to care far their patients in a continuum that extends from the moment of diagnosis throughout the course of the illness. In addition to appropriate anticancer treatment, this includes symptom control and psychosocial support during all phases of care, including those during the last phase of life. In an effort to assure that all patients and their families have access to optimal care at the end of life, ASCO firmly believes it is essential to emphasize a humane system of cancer care based on the following principles: Cancer care is centered around the longstanding and continuous relationship between the primary oncologist or other physician with training and interest in end-of-life care and the patient; Cancer care is responsive to the patient's wishes and to the parents' wishes if the patient is a child; Cancer care is based on truthful, sensitive, empathic communication with the patient, and in the case of pediatric patients, that care is both family centered as well as child focused; and Cancer care optimizes quality of life throughout the course of an illness through meticulous attention to the myriad physical, spiritual, and psychosocial needs of the patient and family. To reach these goals, ASCO has identified numerous obstacles that hinder delivery of high-quality end- of-life care and offers recommendations for improvements. ASCO is committed to informing its membership and the public about the significant barriers to optimal care at the end of life, and advocating legislative and regulatory changes that will eliminate these barriers.
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Research Agenda for Developing Measures to Examine Quality of Care and Quality of Life of Patients Diagnosed with Life-Limiting Illness : White Paper from the Conference on Excellent Care at the End of Life through Fast-Tracking Audit, Standards, and Teamwork (EXCELFAST), September 28–30, 1997
Article
  • Feb 1999
  • J PAIN SYMPTOM MANAG
Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research agenda for the development of a Tool Kit of Instruments to Measure End of Life Care (TIME). Instruments for inclusion in the eventual “Tool Kit” should be patient-focused and family-centered, clinically meaningful, administratively manageable, and psychometrically sound. Prioritizing domains to measure quality of care should be based on consumer input and synergistic with ongoing efforts to formulate guidelines and standards of care. For this vulnerable population, research is needed regarding the timing and sources of data collection. In order to achieve maximal benefit, ultimately measurement tools must be incorporated into existing measurement systems and consideration be given to generating informative reports which leads to institutional action to improve the quality of care.
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Practical Guidelines for Assessing the Clinical Significance of Health-Related Quality of Life Changes within Clinical Trials
Article
  • Jan 2003
Health-related quality of life (HRQOL) assessment is becoming common practice in many clinical trials. There is much debate over how to determine the clinical significance of changes in HRQOL scores. A number of techniques have been used to address this issue. This paper reviews the most popular of these approaches for use in a clinical trial setting. More specifically, the anchor-based “minimal clinically important difference” technique is described and critiqued, as is the more traditional distribution-based effect size technique. A novel application of effect size, which applies a common statistical premise known as the empirical rule, is also presented. The review of these techniques indicates that there is no single, optimal solution to determining clinical significance of changes in HRQOL scores. However, it is encouraging to note that they ail suggest a similar criterion of a half-standard deviation for whether or not a change in HRQOL score is clinically significant. Recommendations are given for reporting the clinical significance of HRQOL assessments in clinical trials.
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Special Section on Measuring Quality of Care at Life's End
Article
  • Mar 1999
  • J PAIN SYMPTOM MANAG
Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and family experience, research is needed regarding the relative merits and cost-effectiveness of prospective or retrospective surveys after the patient's death. Proxies are an important source of information given that the majority of patients can not be interviewed in the last week of life. Research is needed to understand who is best able to serve as a proxy and the validity of their reports. The cost-effectiveness and comparability of alternative data collection strategies need to be examined. These and other important issues need to be addressed in designing reliable, valid, and clinically manageable measures.
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Freedman, B. Equipoise and the ethics of clinical research. N Engl J Med 317: 141-145
Article
  • Aug 1987
The ethics of clinical research requires equipoise--a state of genuine uncertainty on the part of the clinical investigator regarding the comparative therapeutic merits of each arm in a trial. Should the investigator discover that one treatment is of superior therapeutic merit, he or she is ethically obliged to offer that treatment. The current understanding of this requirement, which entails that the investigator have no "treatment preference" throughout the course of the trial, presents nearly insuperable obstacles to the ethical commencement or completion of a controlled trial and may also contribute to the termination of trials because of the failure to enroll enough patients. I suggest an alternative concept of equipoise, which would be based on present or imminent controversy in the clinical community over the preferred treatment. According to this concept of "clinical equipoise," the requirement is satisfied if there is genuine uncertainty within the expert medical community--not necessarily on the part of the individual investigator--about the preferred treatment.
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