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Planning the Transition to End-of-Life Care in Advanced Cancer (PDQ®)

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Supportive Care, Palliative Care, and Hospice in Advanced Cancer

Importance of a Name
        Oncologists’ attitudes toward palliative care
        Public attitudes toward palliative care
Best Supportive Care
Palliative Care
Hospice
        Hospice eligibility criteria
        Patient and caregiver barriers to hospice enrollment
        Physician barriers to hospice enrollment
        Potential shortcomings of the hospice system
        Hospice and resuscitation and other potentially life-sustaining interventions



Importance of a Name

Oncologists’ attitudes toward palliative care

The European Society of Medical Oncology surveyed its members about their attitudes toward and involvement in palliative care for patients with advanced cancer.[1] Eighty-eight percent of respondents endorsed the belief that medical oncologists should coordinate end-of-life (EOL) care, but 42% felt they were inadequately trained for the task. Relatively few respondents collaborated with a palliative care specialist (35%) or inpatient hospice services (26%). The term palliative care has been identified through surveys as a potential impediment to referral to a palliative care clinic.[2] A 2013 report from a single institution that changed the name of its palliative care service to supportive care service demonstrated that outpatients were referred sooner after first hospital registration (median, 9.2 months vs. 13.2 months; P < .001) and sooner after the first diagnosis of advanced cancer (median, 5.2 months vs. 6.9 months; P < .001).[3]

Public attitudes toward palliative care

Public attitudes toward palliative care depend on the description of the service. A 2011 public opinion poll conducted with more than 100 consumers found a lack of knowledge about palliative care among more than 75% of interviewees.[4] After the opinion poll was taken, the definition of palliative care was revised for the public. In the new definition, palliative care is described as “specialized medical care for people with serious illnesses.” The focus of care is defined as relief from pain and other symptoms, regardless of diagnosis. Included in the definition are patient and family quality of life (QOL), the interdisciplinary team of specialists, and the statement that palliative care is appropriate at any age, at any stage of illness, and in conjunction with curative treatment.[4]

Best Supportive Care

The ability to safely administer multiple cycles of chemotherapy depends on a range of interventions to minimize adverse effects. Most oncologists recognize that anticipating, recognizing, and responding to common adverse events with antiemetics, hematopoietic growth factors to reduce the occurrence of red cell transfusions or risks of neutropenia-associated infections, transfusions, medications to alleviate anxiety or depression, and analgesics for pain are mandatory skill sets in medical oncology. In this context, supportive care is an adjunct to the goal of maximizing the benefits of disease-directed treatment while minimizing potential decline in a patient’s health-related QOL.

Three points about the term supportive care are relevant to this section:

  1. Inadequate attention is paid to symptoms or health-related QOL during routine oncology evaluations. Although oncologists may overestimate their skillfulness, it is prudent to refer patients with burdensome symptoms to physicians who have a specific interest in health-related QOL and who have expertise in symptom management. The goal is always optimal supportive care; at times, a palliative care specialist may be required.

  2. The term best supportive care has been used to describe the care received by patients when they were no longer receiving disease-directed treatment. It is unlikely that best supportive care—even when defined within protocols—would be confused with the specialized palliative care provided to patients with advanced cancer.

  3. Using the term supportive care may be preferable for referring clinicians and their patients because it avoids the negative connotation of the term palliative care.

Palliative Care

Palliative care is an interdisciplinary model of care focused on patients with serious or life-threatening illnesses and their families. The goals of palliative care are to:

  • Reduce illness burden, relieve suffering, and maintain QOL through interventions that maintain physical, psychological, social, and spiritual well-being.
  • Improve communication and care coordination.
  • Ensure that care is consistent with the values and preferences of the patient.
  • Ensure that dying occurs with minimal suffering and maximum opportunities for closure.

Palliative care is generally provided by physicians, nurses, social workers, and/or chaplains. Palliative care teams typically focus on alleviation of uncontrolled symptoms, goals of care, distress related to the process of dying, and family burden.

Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care goes beyond the traditional disease model to include goals of care such as the following:

  • Enhanced QOL.
  • Optimization of function.
  • Informed and active decision making.
  • Opportunities for closure and personal growth.

Palliative care can be delivered concurrently with life-prolonging care or as the main focus of care. (Refer to the Integrating Palliative Care Into Conventional Cancer Care section in the Strategies to Improve Patient-Oncologist Communication and Decision Making in Advanced Cancer section of this summary for more information.)

The term palliative care has often been used to communicate the noncurative intent of chemotherapy for patients with advanced cancer or to signal, without clarifying the intent, the transition away from chemotherapy. This use may contribute to the persistent and pervasive sense that palliative care is equivalent to EOL care. However, palliative care is a specialized approach to the care of patients with serious or life-threatening illnesses; it is guided by principles and accomplished via a specific—but by no means exclusive—skill set distinct from the skills required to prescribe and manage chemotherapy.

Hospice

Hospice is a team-oriented approach to providing expert medical care, pain management, and emotional and spiritual support for patients whose life expectancy is no longer than 6 months. Most hospice care is delivered in the home.

Hospice eligibility criteria

The criteria for hospice eligibility are established by state and federal regulations. A licensed physician needs to certify that the patient is suffering from a life-limiting illness, with a life expectancy of no longer than 6 months. The patient must sign a statement choosing hospice instead of other forms of treatment. In addition, the patient must receive care from a Medicare-approved hospice program. Hospice services are covered by Medicare, Medicaid, managed care, private health insurance, other third-party payers, and private pay.

Hospice may be indicated when a patient who has cancer:

  • Presents with distant metastatic disease.
  • Has progressed from an earlier stage of illness to metastatic disease and:
    • Shows continued decline in spite of therapy.
    • Refuses active treatment.
    • Desires palliative and hospice care.

Patients who have poor prognoses, such as those who have pancreatic and brain cancers, can be eligible for hospice without meeting these criteria.[5]

Patient and caregiver barriers to hospice enrollment

The following points summarize the many potential barriers to timely hospice enrollment:

  • Patients and caregivers assume that hospice is only for the final days of life.
  • Preference for life-sustaining treatments may dissuade many patients from hospice enrollment.[6]
  • Many patients believe that hospice means giving up hope.
  • Denial of declining health status may pose a barrier to patients’ willingness to consider hospice.
  • Patients and families may have negative perceptions of hospice.[7]
  • Patient demographics affect their perceptions of hospice.
  • New anticancer therapies provide patients with new options and reasons for optimism, even though the actual clinical benefits may be few.[8]
Physician barriers to hospice enrollment

The following points summarize physician barriers to hospice enrollment:

  • Oncologists have difficulty making accurate predictions about estimated life expectancy and do not offer patients the opportunity to learn about hospice.[9]

  • Referral to hospice may be interpreted as professional failure by the oncologist.[10]

  • Referral to hospice may signify unwelcome loss of control for the oncologist.[11]

  • A trend toward late hospice referral leads to burdensome transitions and patients spending 3 days or fewer in hospice.[12]

  • Oncologists may believe that hospice enrollment will hasten death; however, data do not support this concern.[13] One group of investigators reported on the survival of 4,493 patients from a sample of Medicare beneficiaries for 1998–2002.[14] Hospice enrollment was not significantly associated with shorter survival when compared with nonhospice patients’ survival. Instead, the mean survival was significantly longer for hospice patients with lung and pancreatic cancer and marginally longer for hospice patients with colon cancer.

    A 2011 observational study from South Korea demonstrated that patients who were aware of their terminal illness and admitted to an inpatient palliative care unit had a median survival of 69 days. Survival was unaffected by admission to the intensive care unit, suggesting that patient-level characteristics, rather than medical interventions, influence survival.[15]

  • Oncologists fear that a hospice referral will be seen by the patient as abandonment.

Potential shortcomings of the hospice system

Studies suggest that the hospice requirement that patients forgo disease-directed, potentially life-sustaining treatments may deprive patients in need of services. In one study of 300 cancer patients and 171 family members, willingness to forgo treatment was not well correlated with greater need for hospice services.[16] Instead, independent predictors of patients’ perceived need for hospice services were being African American and having lower social support, worse functional status, and higher psychological symptom burden. For families, predictors included caregiver burden, worse self-reported health, working outside the home, and caring for a cancer patient with worse functional status. The authors suggest that the criterion of ending life-sustaining therapy for hospice be reconsidered.[16]

Hospices' own enrollment policies may contribute to underuse of the benefit in the United States. Results from a national survey of 591 U.S. hospices showed that 78% had at least one enrollment policy restricting access to care for patients with high-cost medical care needs, such as chemotherapy, radiation, transfusions, and total parenteral nutrition. Such policies are more likely to be found at smaller hospices, for-profit hospices, and hospices in rural areas of the country.[17] Whether to define such treatment as curative or palliative is often unclear. In addition, for-profit hospices are less likely to admit patients with shorter, and less profitable, life expectancies.[18]

Hospice and resuscitation and other potentially life-sustaining interventions

While a do-not-resuscitate status is not mandatory for enrollment in hospice, less aggressive medical care near the EOL is associated with higher patient-reported QOL and better bereavement adjustment.[19] Thus, it is important to clarify patient preferences at the time of hospice discussions and, to the extent possible, agree on a plan of care.

References
  1. Cherny NI, Catane R; European Society of Medical Oncology Taskforce on Palliative and Supportive Care: Attitudes of medical oncologists toward palliative care for patients with advanced and incurable cancer: report on a survery by the European Society of Medical Oncology Taskforce on Palliative and Supportive Care. Cancer 98 (11): 2502-10, 2003.  [PUBMED Abstract]

  2. Fadul N, Elsayem A, Palmer JL, et al.: Supportive versus palliative care: what's in a name?: a survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer 115 (9): 2013-21, 2009.  [PUBMED Abstract]

  3. Dalal S, Palla S, Hui D, et al.: Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center. Oncologist 16 (1): 105-11, 2011.  [PUBMED Abstract]

  4. Center to Advance Palliative Care: 2011 Public Opinion Research on Palliative Care: A Report Based on Research by Public Opinion Strategies. New York, NY: The Center to Advance Palliative Care, 2011. Available online. Last accessed July 14, 2014. 

  5. End-Stage Indicators: Disease-Specific Guidelines. Rockville, Md: Montgomery Hospice, 2013. Available online. Last accessed July 14, 2014. 

  6. Casarett D, Van Ness PH, O'Leary JR, et al.: Are patient preferences for life-sustaining treatment really a barrier to hospice enrollment for older adults with serious illness? J Am Geriatr Soc 54 (3): 472-8, 2006.  [PUBMED Abstract]

  7. McCarthy EP, Burns RB, Davis RB, et al.: Barriers to hospice care among older patients dying with lung and colorectal cancer. J Clin Oncol 21 (4): 728-35, 2003.  [PUBMED Abstract]

  8. Mintzer DM, Zagrabbe K: On how increasing numbers of newer cancer therapies further delay referral to hospice: the increasing palliative care imperative. Am J Hosp Palliat Care 24 (2): 126-30, 2007 Apr-May.  [PUBMED Abstract]

  9. Thomas JM, O'Leary JR, Fried TR: Understanding their options: determinants of hospice discussion for older persons with advanced illness. J Gen Intern Med 24 (8): 923-8, 2009.  [PUBMED Abstract]

  10. McGorty EK, Bornstein BH: Barriers to physicians' decisions to discuss hospice: insights gained from the United States hospice model. J Eval Clin Pract 9 (3): 363-72, 2003.  [PUBMED Abstract]

  11. Brickner L, Scannell K, Marquet S, et al.: Barriers to hospice care and referrals: survey of physicians' knowledge, attitudes, and perceptions in a health maintenance organization. J Palliat Med 7 (3): 411-8, 2004.  [PUBMED Abstract]

  12. Teno JM, Gozalo PL, Bynum JP, et al.: Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA 309 (5): 470-7, 2013.  [PUBMED Abstract]

  13. Saito AM, Landrum MB, Neville BA, et al.: Hospice care and survival among elderly patients with lung cancer. J Palliat Med 14 (8): 929-39, 2011.  [PUBMED Abstract]

  14. Connor SR, Pyenson B, Fitch K, et al.: Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage 33 (3): 238-46, 2007.  [PUBMED Abstract]

  15. Yun YH, Lee MK, Kim SY, et al.: Impact of awareness of terminal illness and use of palliative care or intensive care unit on the survival of terminally ill patients with cancer: prospective cohort study. J Clin Oncol 29 (18): 2474-80, 2011.  [PUBMED Abstract]

  16. Casarett DJ, Fishman JM, Lu HL, et al.: The terrible choice: re-evaluating hospice eligibility criteria for cancer. J Clin Oncol 27 (6): 953-9, 2009.  [PUBMED Abstract]

  17. Aldridge Carlson MD, Barry CL, Cherlin EJ, et al.: Hospices' enrollment policies may contribute to underuse of hospice care in the United States. Health Aff (Millwood) 31 (12): 2690-8, 2012.  [PUBMED Abstract]

  18. Lindrooth RC, Weisbrod BA: Do religious nonprofit and for-profit organizations respond differently to financial incentives? The hospice industry. J Health Econ 26 (2): 342-57, 2007.  [PUBMED Abstract]

  19. Wright AA, Zhang B, Ray A, et al.: Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300 (14): 1665-73, 2008.  [PUBMED Abstract]