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What is palliative care, after all?
Differentiating between hospice, palliative care and supportive care.
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Hospice, palliative care, supportive care: in oncology it is hard to keep track of all the different terms. What do they mean? What is the difference between them? The purpose of this editorial is to elucidate their meaning and role in oncology practice and research.
We should admit upfront our nervousness at trying to distinguish between these terms. Many use them synonymously and choose between them for local political reasons. Others will say they all have the same goal — treating the burden of cancer — and have evolved differently because of administrative and financial constraints. We agree with all of this. Still we thought it would be helpful to give our idiosyncratic view of how the different programs fit together. Finally we will highlight how one of the programs — palliative care — is growing and the opportunities of this for oncology.
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Terminology
In the United States, modern palliative care is an outgrowth of the hospice movement. The principles of hospice and palliative care are the same: improving the quality of life of patients with life-limiting illness and their family by focusing on their physical, emotional and spiritual needs. The difference is that although palliative care services can be provided concurrently with the disease modifying therapies, hospice services are usually provided after the patient has decided to forgo disease modifying therapies. In addition, hospice is typically provided in the ambulatory setting, while the recent growth in palliative care has focused on hospital based programs.
The term supportive care dates back to research trials examining the effectiveness of a new cancer drug by comparing its benefit to the best symptomatic care or supportive care. Supportive care is thus defined as much by what it is not (not cancer-focused treatment) as what it is (treatment of the burden of cancer).
Supportive care, like palliative care, can be used with disease modifying treatments. In fact, supportive care currently refers to all non-cancer focused treatment, regardless of whether the disease is life limiting or not. The use of classic supportive care measures with chemotherapy such as transfusions, growth factors, and anti-emetics have allowed for higher doses of chemotherapy to be administered.
Autologous stem cell rescue can be considered an ultimate form of supportive care because it provides a way to limit the complications of the high doses of chemotherapy needed to treat the underlying cancer. This has resulted in improved survival both by decreasing deaths due to toxicities and by improving response rates. Finally, supportive care, at least in the literature, focuses less on spiritual, communication and psychological issues than palliative care.
Palliative and supportive care
Given the above definitions, the different research outcomes in palliative and supportive care become clearer. Research in palliative care focuses on quality of life, symptoms and physician-patient communication in patients with life limiting illness. The primary endpoints are typically improvement in quality of life, specific symptom control, satisfaction or spiritual care.
On the other hand, primary endpoints in the supportive care trials can also focus on symptoms. Supportive care research also deals with issues such as the need for transfusions, days of neutropenia, febrile neutropenia or specific toxicity reduction. Both palliative and supportive care trials have looked at overall survival as an outcome.
Regardless of which term is used, historically, research in supportive or palliative care has not been a funding priority. Pain research receives less 1% of NIH funding and a recent study documented the meager funding for palliative care investigators
The future of palliative care research
Things are changing. The 2001 Institute of Medicine’s report titled: Improving Palliative Care: We Can Take Better Care of People with Cancer and the NIH Palliative Care State of the Science conference both called for increased funding for palliative care research. The NCI now requires research in palliative care and symptom control as a requirement for recognition as “comprehensive cancer center.”
In addition, the National Center for Nursing Research, the home for palliative care, is working with NCI and the National Institute of Aging to support new research endeavors in the field. Several other organizations including the American Cancer Society and the National Center for Palliative Care research have funded palliative care in recent years.
Even more exciting are the new grants that are springing up for junior investigators and the number of K awards focusing on palliative care. In terms of education and building a human capital, several teaching programs are now offering combined fellowship in oncology and palliative care.
The research in palliative care oncology has tremendous opportunities to answer important questions such as:
- How to assess overall quality of life of patients with cancer, either due to the disease or the therapies.
- How to assess and optimize different domains of quality of life including physical symptoms, emotional concerns and spiritual needs.
- Whether best evidence-based practices that address symptoms also lead to changes in overall survival.
- What the impact of improving physician communication skills is on patient outcomes.
Palliative care in clinical oncology
For a practicing oncologist, the growth in palliative care is an exciting development. Clinically palliative care can help oncologists provide total care to the patients, focusing both on physical symptoms and emotional, spiritual and social issues associated with advanced cancer. Palliative care consultation teams can work with oncologists to address appropriate symptoms across various settings (outpatient or inpatient) both during and after the disease modifying therapy has ended. Some of these symptoms such as pain, anxiety and depression are extremely time consuming for a busy oncologists and working with a palliative care team can thus improve efficiency.
For more information:
- Biren Saraiya, MD, is a fellow in Hematology-Oncology at the Cancer Institute of New Jersey at UMDNJ-Robert Wood Johnson Medical School.
- Robert Arnold, MD, is the Leo H. Criep Chair in Patient Care Professor of Medicine in the Division of General Internal Medicine and Chief of the Section of Palliative Care and Medical Ethics at the University of Pittsburgh.