Many professionals in oncology associate palliative care with end-of-life care. While it is true that one type of palliative care, hospice, is for patients in the last months of life, palliative care is much broader than that (see FIGURE). In fact, palliative care is appropriate at any age and at any stage in a serious illness like cancer and can be provided together with curative treatment. The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”1
The evidence is clear that when patients receive palliative care, their outcomes improve. A 2014 review concluded that palliative care increases patients’ quality of life, provides a better overall quality of care with less aggressive end-of-life treatment, and lessens emotional distress. Beyond these outcomes, palliative care also helps with more equitable resource utilization by identifying patients for whom aggressive curative measures are either unwarranted or unwanted. As a result, patients receiving palliative care—and their families—make different choices, resulting in reduced hospitalizations and intensive care unit (ICU) admissions, and consequently in cost savings.2
Evidence pointing to the benets of involving palliative care earlier in oncology cases continues to grow. In one seminal study conducted in an ambulatory oncology clinic, published in 2010, patients newly diagnosed with stage IV non-small cell lung cancer (NSCLC) were randomized to either regular oncology care or an experimental group that got palliative care concurrent with regular oncology care. Quality of life, mood, and survival were measured at baseline and at 12 weeks after treatment. Another measured parameter was “aggressive care,” denied as chemotherapy within 2 weeks of death or later or no hospice admission. Patients who received both palliative care and regular oncology care had signicantly higher quality of life scores, were less depressed, and sought less aggressive care. Interestingly, despite receiving less aggressive care, those patients lived an average of 2.7 months longer.3 More recent studies have shown that early palliative care for cancer patients is associated with earlier do-not-resuscitate designations and less frequent ICU deaths.4 Earlier palliative care referral has also been associated with fewer emergency department visits, hospitalizations, and hospital deaths.5
Why these results? One explanation is that a palliative care referral can lead to reduced use of chemotherapy or other treatment in the last days or weeks of life. During such a referral, patients and families have the chance to share their personal goals and priorities while also being offered the full range of treatment options, including palliative or supportive care and, if appropriate, hospice. When palliative care providers ask patients where they want to die or how they want to spend their remaining time, fewer patients choose the hospital or the ICU. This is critical, because if we do not seek patient preferences or fail to give them the full range of choices including palliative care, those who continue on aggressive treatments like che- motherapy in the last weeks of life have an increased risk of undergoing CPR, of being on a ventilator, and of dying in an ICU.6 This is probably not the preferred scenario of patient or family. In his best-selling book, Being Mortal: Medicine and What Matters in the End, Atul Gawande, MD, MPH, discusses the importance of asking these key questions.7
In this evolving landscape, the American Society of Clinical Oncology (ASCO) issued a Provisional Clinical Opinion in 2012 calling for the integration of palliative care into standard oncology care,8 including the guideline that people with metastatic NSCLC should be offered concurrent palliative care and standard oncologic care at initial diagnosis. Generally, for other cancers, ASCO’s position is that evidence suggests that combining palliative care with oncologic care leads to better patient and family outcomes, with no harm to either party, and that no excessive costs accrue from early palliative care involvement.8 The ASCO expert consensus is summarized in the .
The Institute of Medicine, in its 2013 Report on Cancer Care, called for palliative care to occur at the beginning of the cancer continuum, at diagnosis, then continue through treatment, survivorship and, if need be, end-of-life care.9 One rationale for offering palliative care to oncology patients undergoing active treatment is that it can help them better tolerate and complete that treatment, which results in improved outcomes and a better chance for survival. For example, in a case I am familiar with, a 45-year-old woman was diagnosed with an aggressive form of B-cell lymphoma several months after she gave birth to twins. She received the standard chemotherapy protocol at a leading cancer center, which put her cancer into remission. Unfortunately, she relapsed 18 months later and underwent an autologous stem-cell transplant. While at the cancer center for induction, she developed intractable nausea and, though already thin, lost much weight. She also had pain and found it emotionally trying to be away from her family, about whom she was understandably worried.
At a friend’s suggestion, she asked her oncology team to consult the cancer center’s palliative care service. Her team initially felt this wasn’t appropriate, because her death wasn’t likely, but the patient’s concern was that she would die if the nausea and other issues weren’t addressed. Acceding to her wishes, the palliative care team was consulted. They got her nausea and pain under control, provided emotional and spiritual support, and even helped her get an absentee ballot for an important election. She made it successfully through the transplant and is still in remission 4 years later. While palliative care was not solely responsible for her good outcome, this patient will assure you it played an important role.
But this case study also showcases the barriers patients and families can face when seeking palliative care services. Unfortunately, many clinicians think palliative care is only for dying patients and they avoid considering or recommending it until the final days.2,10 In an attitudinal research study of physicians, they described palliative care as “comfort care” for dying patients.11 None thought it was appropriate earlier in a serious illness.11 This is ironic, as many physicians in other studies have acknowledged that they would not choose aggressive care themselves, were they to be seriously ill.12
IMPROVING ACCESS TO PALLIATIVE CARE
Among the ways palliative care can be made more accessible to oncology patients are:
• Oncology practices can develop partnerships with palliative care services in their health systems or geographic areas. Such resources are increasing, with certications for palliative physicians, advance practice nurses, and nurses. The certication training makes these care providers particularly adept at symptom assessment, management, and communication. Most cancer centers and large hospitals have palliative and supportive care services, the staffs of which are happy to work more collaboratively with their oncology partners. More pharmacists can receive palliative care training to support the management of complicated medication regimens.
• While palliative care is still developing in the outpatient arena, it can prove quite benecial. In one study involving a palliative care—certied physician and nurse practitioner who joined forces with an oncology clinic, palliative care referrals increased 87% and symptom burden among the clinic’s patients decreased 21%.13 What’s more, the clinic’s oncologists rated their satisfaction with the palliative care service as 9 on a scale of 10, and each palliative care referral saved, on average, 170 minutes of their time.13
• Oncology clinicians can be trained to provide primary palliative care themselves—just as clinicians are expected to have basic prociency in, say, cardiology or nephrology, with specialists available to handle more complex cases. For palliative care to become a standard part of oncology care, all oncology clinicians would need to learn the requisite skills of communication and of symptom assessment/management, and to learn to provide emotional and spiritual support for their patients. Of course, many already do, and their teams may include such patient- and family- support resources as social workers, case managers, and chaplains. However, this is not always the case. Sometimes the oncologist alone has to help a challenging patient or family, and primary palliative care training would be invaluable.
If palliative care becomes part of standard oncology care, then patients and families will no longer worry that receiving such treatment means they are dying. Instead, they will appreciate providers who are trained to listen to them, who solicit their values and goals, and who partner with them when making important medical treatment decisions. The improved outcomes that result will benefit us all.
Marian Grant, DNP, CRNP, ACHPN, FPCN, is an assistant professor at the University of Maryland School of Nursing, Baltimore, MD.
1. WHO definition of palliative care. World Health Organization website. http://www.who.int/ cancer/palliative/definition/en. Updated 2014. Accessed July 28, 2014.
2. Hughes MT, Smith TJ. The growth of palliative care in the United States. Annu Rev Public Health. 2014;35:459-475.
3. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
4. Alsirafy S, Mohammed A, Al Zahrani A, Raheem A, El-Kashif A. The relation between the timing of palliative care and the frequency and timing of do-not-resuscitate orders among cancer deaths in a tertiary care hospital [published online March 26, 2014]. Am J Hosp Palliat Care. doi:10.1177/1049909114529014.
5. Hui D, Kim S, Roquemore J, Dev R, Chisholm G, Bruera E. Impact of timing and setting of palliative care referral on quality of end-of-life care in can- cer patients. Cancer. 2014;120(11):1743-1749.
6. Wright AA, Zhang B, Keating NL, Weeks JC, Prigerson HG. Associations between palliative chemotherapy and adult cancer patients’ end of life care and place of death: prospective cohort study. BMJ. 2014;348:g1219.
7. Gawande A. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books, Henry Holt & Company; 2014.
8. Smith TJ, Temin S, Alesi ER, et al. American So- ciety of Clinical Oncology provisional clinical opin- ion: the integration of palliative care into standard oncology care. J Clin Oncol. 2012;30(8):880-887.
9. Committee on Improving the Quality of Cancer Care: Addressing the Challenges of an Aging Population; Institute of Medicine; Levit LA, Balogh E, Nass SJ, Ganz PA, eds. Delivering High-quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: National Academies Press; 2013.
10. Parikh RB, Kirch RA, Smith TJ, Temel JS. Early specialty palliative care--translating data in oncology into practice. N Engl J Med. 2013; 369(24):2347-2351.
11. 2011 public opinion research on palliative care. Center to Advance Palliative Care website. https://www.capc.org/media/ filer_public/18/ab/18ab708c-f835-4380-921d- fbf729702e36/2011-public-opinion-research- on-palliative-care.pdf. Updated 2011. Accessed March 9, 2015.
12. Periyakoil VS, Neri E, Fong A, Kraemer H. Do unto others: doctors’ personal end-of-life resuscitation preferences and their attitudes toward advance directives. PLoS ONE. 2014;9(5):e98246.
13. Muir JC, Daly F, Davis M, et al. Integrating palliative care into the outpatient, private practice oncology setting. J Pain Symptom Manage. 2010; 40(1):126-135.