Palliative Care and Hospice: A Review for the Hematology/ Oncology Practitioner
Stephanie Abel, PharmD
PGY-1 Pharmacy Practice Resident
Medical University of South Carolina, Charleston, SC
Palliative care and hospice currently are buzzwords in the oncology community. The American Society of Clinical Oncology (ASCO) published a Clinical Consensus Statement in 2012 urging oncologists to consider palliative care at the time of diagnosis of metastatic cancer or at any time in those with a high symptom burden.1 The National Comprehensive Cancer Network (NCCN) Palliative Care Guidelines suggest that palliative care begin at cancer diagnosis in concordance with disease-directed, life-prolonging therapies.2
The utilization of palliative care and hospice services is increasing and will likely continue as patient and caregiver outcomes improve, satisfaction with these services increases, and proposed economic benefits are realized.1 This article defines palliative and hospice care, summarizes recent evidence regarding the benefit of these services, identifies symptoms that palliative care addresses, and summarizes the pharmacist’s role in providing palliative care services.
Palliative care is comprehensive patient and family care focusing on the relief of distressing symptoms of a chronic illness.2 This is accomplished by incorporating psychosocial and spiritual care individualized to patients’ and families’ needs, values, beliefs, and cultures. Goals of palliative care include anticipating, preventing, and reducing the suffering of the patient and family, in addition to supporting the best quality of life throughout the course of the disease.2
Hospice care focuses on the patient’s quality of life as opposed to length of life. The goal of hospice care is to provide humane and compassionate care for patients during the late phases of an incurable disease so that they may live as fully and comfortably as possible.3 Hospice care and palliative care are very similar in that they both seek to provide the patient with the best possible quality of life. However, patients must have an estimated prognosis of 6 months or less to qualify for hospice care services in the United States. In essence, all hospice care is palliative care but not all palliative care is hospice. Palliative care can be provided during all stages of chronic disease and should not be equated to end-of-life (EOL) care. If the patient lives longer than 6 months, they may still participate in hospice care as long as their prognosis does not extend beyond 6 months. The philosophy of hospice is to accept death as the final stage of life. Hospice services neither hasten nor postpone death and promote treating the patient as a whole person rather than just treating a disease.
Overview of Recent Evidence
Temel and colleagues4 conducted a study of 151 adult patients with newly diagnosed metastatic non-small-cell lung cancer (NSCLC) who were randomized to receive early palliative care (PC) in addition to standard oncology care or to solely receive standard oncology care. Patients were recruited from a single outpatient clinic in Massachusetts. The intervention arm received a baseline PC assessment and an outpatient follow-up visit at least monthly with a multidisciplinary PC team. The primary outcome was change in quality of life (QOL) at 12 weeks based on the Trial Outcome Index (TOI), which consisted of the sum of scores from the Lung Cancer Sub-scale (LCS) and the Functional Assessment of Cancer Therapy-Lung (FACT-L). The FACT-L evaluates several aspects of QOL and the LCS is a subscale of the FACT-L that evaluates seven symptoms specific to lung cancer. The FACT-L scale is validated and has been used extensively for QOL assessment in patients with lung cancer.5 Secondary outcomes included mood assessments and incidence of aggressive EOL care defined as chemotherapy within 14 days of death, lack of hospice care, or hospice admission ≤3 days before death.
When comparing QOL, the PC intervention group had significantly higher scores in the FACT-L, TOI, and LCS (p = .03, .009, and .04, respectively). The PC intervention group had fewer depressive symptoms as measured by the Hospital Anxiety and Depression Scale (HADS) and Patient Health Questionnaire 9 (PHQ-9; p = .01). HADS and PHQ-9 are both validated scales and are commonly used to measure the outcomes assessed in this study.6,7 At the time of analysis of EOL care, 105 patients (70%) had died. Aggressive EOL care was more common in the standard oncology care group compared with the PC group (54% versus 33%, p = .05). Although patients in the PC group had less aggressive EOL care, the patients in this arm survived 2.7 months longer than those in the standard oncology care group (p = .02).4
Gade and colleagues8 at Kaiser Permanente randomly assigned 512 seriously ill patients receiving care in the hospital at three sites within the United States to receive either usual care (UC) or usual care plus an interdisciplinary palliative care service (IPCS). The percentage of patients with a cancer diagnosis was 27.3% and 34.4% in the IPCS and UC groups, respectively. The primary outcomes were to assess patient satisfaction, clinical outcomes assessed by overall survival, and cost of care for 6 months after hospital discharge. The IPCS treatment arm reported greater satisfaction with their care experience (p = .04). There was no statistically significant difference between groups in median survival from study enrollment and death during the study period (p =.08 for both measures). The total mean health costs were $6,766 lower in the IPCS group (p < .001). In addition, patients in the IPCS arm had significantly fewer intensive care unit readmissions (IPCS: n = 12, usual care: n = 21, p = .04).
Palliative care models are not uniform in the literature, and although many models have been assessed, a benefit has been shown despite a lack of standardization. In addition, no studies to date have shown harm in any form to patients from a palliative care or hospice care intervention. Many national and international organizations have adopted a positive stance on the use of palliative care and hospice care in chronic illness and at the end of life based on the benefits observed in clinical trials.1
Symptoms Addressed by Palliative Care
There are several symptoms (Table 1) that patients should be assessed for during each visit that may have an impact on their QOL. Many of these symptoms may be treated with both nonpharmacologic and pharmacologic measures and can be valuable interventions made by the pharmacist on the team. The NCCN and World Health Organization (WHO) offer thorough and complete resources that provide guidance on treatment options to address these symptoms.
Role of the Pharmacist
Medication therapy management is a large part of symptom management in palliative care, and, therefore, pharmacists have the potential to make a great impact on this area of care. Some traditional aspects that apply to most areas of pharmacy practice apply in palliative care, including assessing medication appropriateness, reviewing medication profiles, counseling patients and caregivers, and providing drug information. Patients who are approaching the end of life may not tolerate adverse drug reactions and have an increased risk of iatrogenic complications. In addition, medications that prove to be ineffective for the patient need to be identified and modified quickly because time and goals of care may be of the essence.10 Pharmacists should keep in mind the patient’s current goals of care, condition, tolerance of current regimen, and financial situation when performing a medication profile review. Medication administration issues may arise and the pharmacist can provide valuable input as to methods of administration, compounding options, and appropriate agent selection individualized to patient-specific circumstances.
Patient and caregiver education is of the utmost importance in palliative care. Medication regimens are only as effective as the patient’s and caregiver’s understanding of and adherence to the therapeutic plan. A patient’s concern for symptom management may be clouded by concern about addiction, side effects, the social stigma associated with taking many medications, or financial barriers.10 Taking the time to understand the potential barriers to adherence, educating the patient and caregiver, and providing expertise to help navigate these medication-related issues can influence the success of a medication regimen.
In addition to patient education, the pharmacist can provide invaluable education to the healthcare team. As noted above, patient barriers to effective symptom management exist. Similarly, barriers to effective symptom management and pain control are present within the health-care system as well as within the healthcare team. Healthcare professionals may have inadequate knowledge to assess and manage pain, fear of patient addiction or tolerance, concern for side effects of analgesics, or concern about regulation of controlled substances. Barriers to effective pain management also exist within the healthcare system. Insurance companies may inadequately reimburse for pain assessment and treatment and may not cover the best pain management agents for the patient. The medications also may be too expensive even if the patient has insurance and therefore may not be feasible options. Treatment availability may be limited or access may be restricted. Not all of these barriers can be addressed immediately, but keeping them in mind while providing patient care may help avoid potential problems.11 The pharmacist is well suited to help identify and address these issues to improve patient outcomes.
Palliative care focuses on treating the whole person and not just the disease state. Hospice care utilizes the principles of palliative care in a patient population with a prognosis of less than 6 months to live. Palliative care services have been shown in the literature to provide benefit to patients by improving QOL, providing less aggressive EOL care, decreasing healthcare costs, and prolonging survival. The pharmacist can play an integral role on a palliative care team or a general oncology team as an advocate for palliative care. In addition to general pharmacy practice services, the pharmacist can educate the patient, caregiver, and healthcare team about medication options, adherence, and barriers to adherence. The pharmacist can help assess symptoms at each encounter, assess efficacy of the current regimen, and make pharmacologic and nonpharmacologic recommendations throughout the course of palliative care treatment.
1. Smith TJ, Temin S, Alesi ER, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol. 2012 Mar 10;30(8):880-887.
2. National Comprehensive Cancer Network. NCCN clinical practice guidelines: palliative care v.2.2013.
3. What does hospice care provide? American Cancer Society website. www.cancer.org/treatment/findingandpayingfortreatment/choosingyourtreatmentteam/hospicecare/hospice-care-services. Accessed September 24, 2013.
4. Temel JS, Greer JA, Muzikansky A, et al. Early palliative carefor patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010 Aug 19;363(8):733-742.
5. Functional Assessment of Cancer Therapy-Trial Outcome Index (for Lung Cancer)—(FACT-TOI) Online Document. Radiation Therapy Oncology Group website. www.rtog.org/LinkClick.aspx?fileticket=JTr_jD15mvw%3D&tabid=118. Accessed December 18, 2013.
6. Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res. 2002 Feb;52(2):69-77.
7. Instructions for Patient Health Questionnaire (PHQ) and GAD-7 Measures. PHQ Screeners website. www.phqscreeners.com/instructions/instructions.pdf. Accessed December 18, 2013.
8. Gade G, Venohr I, Conner D, et al. Impact of an inpatient palliative care team: a randomized control trial. J Palliat Med. 2008 Mar;11(2):180-90.
9. Palliative care: Symptom management and end-of-life care Web document. World Health Organization website. www.who.int/ hiv/pub/imai/genericpalliativecare082004.pdf. Accessed November 15, 2013.
10. Cortis LJ, McKinnon RA, Anderson C. Palliative care is everyone’s business, including pharmacists. Am J Pharm Educ. 2013 Mar 12;77(2):21.
11. Pain (PDQ®): Supportive care—Health Professional Information [NCI]. University of Wisconsin Health website. www.uwhealth.org/health/topic/nci/pain-pdq-supportive-care-health-professional-information-nci/ncicdr0000062738.html. Accessed October 26, 2013.