First Issue, Series Two
Overview of Palliation in Cancer
This, the first issue in the second annual Conquering the Cancer Care Continuum series, focuses on palliation in cancer care. Future articles in the series will explore oncology pain management, hospice care options, treatment planning through the cancer care continuum, survivorship care programs, and the role of biosimilars in supportive care. This article introduces and distinguishes the concepts of palliative care and hospice care in the context of cancer care.
Cancer is the second most common cause of death in the United States after heart disease. The American Cancer Society (ACS) estimates that in 2012 almost 580,000 individuals will die of cancer.1 The ACS also estimates that at the beginning of 2012 nearly 14 million Americans with a history of cancer were still alive. This does not include individuals with noninvasive cancers other than bladder cancer or those with nonmelanoma skin cancers. Over the next 10 years, estimates indicate the number of cancer survivors in the United States will increase to nearly 18 million individuals.2 This translates into a large number of people who will be potential candidates for palliative and/or hospice care.
In 2010, a task force of the American Academy of Hospice and Palliative Medicine estimated that there were about 4400 hospice and palliative care medicine physicians in the United States, and that most of them practiced this specialty part time. This task force further estimated that nearly 4500 hospice care physicians and nearly 11,000 palliative care physicians would be needed full time to staff hospice- and hospital-based programs at an appropriate level. Therefore, there is an acute shortage of hospice and palliative care physicians, and the current capacity of training programs will not fill this gap. This shortfall can only be expected to worsen as the number of patients with cancer who need palliative and hospice services increases.3 Changes in current healthcare regulations and growth in palliative services offered in long-term care and home-based programs could further increase the need for physicians specifically trained in hospice and palliative care medicine.3 However, the need for more hospice and palliative care medicine physicians could be alleviated, at least in part, by some of their workload being transferred to nurse practitioners and other advanced practice nurses with appropriate training in palliative care.3
Palliative care improves quality of life
Palliative care is defined as any type of treatment that focuses on reducing patients’ symptoms and improving their quality of life, and that also provides support for patients, their families, and their caregivers.4 Even when cure is the goal of cancer treatment, palliative care improves the quality of life of patients, their satisfaction with care, and end-of-life outcomes and reduces the burden on caregivers.5-7 Palliative care has also been shown to decrease the inappropriate use of medical interventions, decrease pain and symptom distress, increase survival (for some types of cancer), and possibly improve the survival of family caregivers of patients after the patients have died.6
Hospice care is a form of palliative care
The focus of hospice care is on enhancing patient quality of life, and like palliative care, it may also extend survival.8 Hospice care is palliative care that is given to individuals of any age with any type of cancer who have a life expectancy of 6 months or less.4,8 Therefore, at least in theory, palliative care is offered earlier in the cancer disease journey than hospice care.9
Patients who are receiving hospice care who survive longer than 6 months are still eligible to continue in hospice with recertification.10 Hospice care is given to patients who are no longer receiving cancer-specific treatment because their cancer is incurable. Despite promoting this definition of hospice, Cancer.Net, which publishes oncologist-approved information for patients from the American Society of Clinical Oncology, suggests that patients might opt to continue disease-specific anticancer treatment even when their cancer is not responding to treatment if they are unable to accept a terminal diagnosis or to accept that their cancer treatment is futile. This could be an issue for patients covered by Medicare who might not be eligible for both active disease treatment and hospice care simultaneously.8 It is recommended, therefore, that the agreement to accept hospice care should be accompanied by an informed decision to discontinue curative cancer treatment.6
When palliative care is appropriate
Palliative care should begin as soon as possible and continue throughout the continuum of the cancer journey independent of the expected outcome, that is, whether the cancer is deemed curable or not. Patients of any age are eligible for palliative care, including children, and family members and caregivers may also receive treatment, eg, counseling, to help them handle the patient’s diagnosis and burdens of caregiving.4 Palliative care is not end-of-life care per se, and should not be instituted only after treatment is deemed ineffective.6 There is no gold standard for palliative care programs.11 Suggested goals of palliative care include addressing the following patient conditions and concerns:
- physical symptoms, eg, pain or nausea, whether due to the cancer or resulting from its treatment
- emotional symptoms, eg, anxiety, depression
- practical requirements, eg, transportation, financial worries, legal issues, employment, insurance
- social needs, eg, family or other relationship problems
- spiritual needs and care
In addition, palliative care should include addressing the needs and concerns of the patient’s family and caregivers.4,9,12
Administration of palliative care
Ideally, palliative medicine practitioners should form part of a multidisciplinary team along with other specialists to manage symptoms and provide support for maintaining an appropriate care setting for patients.6,12 Palliative medicine is a formally recognized medical subspecialty, with accreditation of Hospice and Palliative Medicine as a subspecialty provided by the American Board of Internal Medicine.5 Someone with this accreditation would be ideal to lead the multidisciplinary team, although, as mentioned, there is a shortage of these individuals in the United States. Currently there is a wide range of services considered to fall under the umbrella of palliative care, and all appropriate services may not be available or provided in a given setting.12 Palliative care may be provided in a hospital or other setting such as the patient’s home, outpatient clinic, acute palliative care unit, or in a long-term care facility.6,9,12
Nurses are important members of the palliative care team and may often be the ones directly delivering physician-ordered care to the patient.4 There is clinical trial–based evidence that nurse-led educational and follow-up interventions for patients with advanced cancer can improve patient quality of life and mood, but these interventions did not alter symptom control, hospitalizations, and hospice use, possibly because the latter three are usually under the management of a physician.5,12 Counseling may be provided for the patient, family, and caregivers by social workers or others with specific psychiatric training. Services can include grief counseling after the patient’s death. Social workers may also help patients and their families resolve financial concerns and can facilitate patient transitions, whether from the hospital to home or, if and when the time comes, from palliative care to hospice care.4,9 Patients may also be referred to physical therapists who can help them maintain functional mobility and ensure a safe home environment. Occupational therapists can aid with specific mobility and function related to activities of daily living.4 The team can also include dieticians and pharmacists.9
Models of palliative care
Bruera and Hui describe 3 models that oncologists might use to integrate palliative and supportive care into their practices.13 Palliative care is sometimes referred to as “supportive” care because surveys show that oncologists find the term less distressing than the term “palliative” and the use of the descriptor “supportive” may facilitate earlier patient referrals to this type of care.14 The advantages and disadvantages of each care model are summarized in the Table.13
In the solo practice model the oncologist not only assesses, treats, and manages the primary disease (cancer), but also takes responsibility for the patient’s supportive and palliative needs. This is the model often followed in private practice and in communities where palliative care consultants are not available. In the congress approach, which is an attempt at interdisciplinary care, the primary oncologist refers patients to multiple consultants; the patient would see one consultant for pain, another consultant for neurologic symptoms, a psychiatrist or psychiatric social worker for psychosocial distress, and so on. In the true integrated care model, the oncologist’s primary focus is managing the patient’s cancer, while the supportive/palliative team manages the patient’s physical and psychosocial symptoms and distress. In this integrated care model there is still space for consultations with specialists to handle specific problems, eg, a pulmonary consult in the case of bronchial obstruction, but it is the palliative care team that addresses most of the patient’s concerns.13
Although it is possible, and may be necessary, to follow the solo practice model, Bruera and Hui believe that oncologists are better served by following an integrated care model, and they do not recommend the congress approach. They observe that palliative care can be integrated into the current model of cancer care that already includes collaboration among practitioners of surgical, radiation, and medical oncology.13 Muir and colleagues described a pilot study of integrating palliative care into an outpatient, private practice oncology setting that included physicians and nurse practitioners, and was not a solo practice. This resulted in a measurable reduction in symptom burden for patients, savings in oncology provider time per palliative care consultation, cost savings, and an increase in referrals from within the embedded practice. The authors speculate that this model may improve quality of care and should be studied further.15
Nevertheless, the most recent data, available from a 2009 survey of cancer centers approved by the Commission on Cancer, indicate that even though there are palliative care programs at most cancer centers, there is much room for improvement in the delivery of palliative care. Programs across the United States are heterogeneous, and half do not have an outpatient clinic, palliative care unit, or hospice, and less than half had fellowship or research programs. This may be an overestimate because nonaccredited hospitals were not included in the survey. Referrals to palliative care tended to occur late in the course of disease, rather than early, even though late referral limits the effectiveness of palliative care.11
Hospice care settings
The same types of providers involved in palliative care are responsible for hospice care.8 However, when a patient receiving palliative care becomes eligible for hospice care, their palliative care team may not be the same team responsible for their hospice care. A palliative care specialist can help the patient make that transition.4 Hospice care is most often administered to patients in their own homes.6 However, hospice care can also be delivered in hospitals or in nonhospital inpatient settings such as hospice centers or skilled nursing facilities.8,16
Although there has been resistance to palliative care comanagement among some oncologists, palliative care not only has benefits for patients with cancer and their caregivers when initiated at diagnosis, it is relatively low in both risks and costs when compared with active anti-cancer treatments. The requirement for access to palliative by certifying organizations, such as the American College of Surgeon’s Commission on Cancer, is likely to improve patient access.6
In addition, the Affordable Care Act will require hospice to report to the Centers for Medicare & Medicaid Services on quality measures by October 2013.10 Pain experienced by cancer patients at all stages of the disease is a significant problem and is associated with other symptoms and complications.6 Pain management in oncology is the subject of the next article in this series.
- American Cancer Society. Cancer Facts & Figures 2012. Atlanta, GA: American Cancer Society; 2012.
- American Cancer Society. Cancer Treatment and Survivorship Facts & Figures 2012-2013. Atlanta, GA: American Cancer Society; 2012.
- Lupu D, American Academy of Hospice and Palliative Medicine Workforce Task Force. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage. 2010;40(6):899-911.
- Cancer.Net. Palliative Care. http://www.cancer.net/all-about-cancer/ treating-cancer/palliative-care. Accessed October 9, 2012.
- Debono DJ. Integration of palliative medicine into routine oncological care: what does the evidence show us? J Oncol Pract. 2011;7(6):350-354.
- Meier DE, Brawley OW. Palliative care and the quality of life. J Clin Oncol. 2011;29(20):2750-2752.
- El-Jawahri A, Greer JA, Temel JS. Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. J Support Oncol. 2011;9(3):87-94.
- Cancer.Net. Hospice Care. http://www.cancer.net/coping/end-life-care/hospice-care. Accessed October 9, 2012.
- National Cancer Institute. Palliative Care in Cancer Fact Sheet. 2010.
- Fletcher DS, Panke JT. Improving value in healthcare: opportunities and challenges for palliative care professionals in the age of health reform. J Hospice and Pall Nursing. 2012;14(7):452-459.
- Hui D, Elsayem A, De la Cruz M, et al. Availability and integration of palliative care at US cancer centers. JAMA. 2010;303(11):1054-1061.
- Bruera E, Hui D. Standards for palliative care programs, interventions, and outcomes: not quite there yet. J Supp Oncol. 2011;9(3):95-96.
- Bruera E, Hui D. Integrating supportive and palliative care in the trajectory of cancer: establishing goals and models of care. J Clin Oncol. 2010;28(25):4013-4017.
- Cherny NI. Stigma associated with “palliative care.” Cancer. 2009;115 (9):1808-1812.
- Muir JC, Daly F, Davis MS, et al. Integrating palliative care into the outpatient, private practice oncology setting. J Pain Symptom Manage. 2010;40(1):126-135.
- National Cancer Institute. Hospice Fact Sheet. 2006.
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