HW is a 71-year-old male diagnosed with a recurrence of colorectal cancer in the spring of 2012 with radiographically confirmed metastases bilaterally in his lungs and throughout his liver. Palliative chemotherapy was undertaken at that time with initial response documented by CT scan and serum CEA monitoring. However, within the past 2 months HW has experienced progressively worsening pain (rated 8/10 on a numeric pain scale) in his right side (consistent with progressive liver metastases) and today is severely jaundiced (total bilirubin has increased from 8 mg/dL to 26 mg/dL in the past 2 weeks). The decision is made to transition HW to hospice care.
In the case described above, it is evident that HW is experiencing hepatic failure at a rapidly progressing rate consistent with extensive liver metastases. At this point, his prognosis is poor, and he likely would not be considered a candidate for additional chemotherapy or other life-prolonging treatment. For patients like this, hospice care often becomes an appropriate option for consideration as it focuses on ensuring that the patients’ basic needs and comfort are addressed during their final days of life. These decisions are a daily occurrence in oncology practice but are often fraught with emotional difficulty and uncertainty for patients and their families. The transition to hospice care and away from the traditional medical establishment represents more than a change in philosophy of care, it represents a change to unfamiliar healthcare providers, questions related to insurance coverage or financial costs, new medications, and sometimes a change in the setting where care will be provided. As such, hospice programs employ large multidisciplinary teams to attend to the potential barriers that would prevent a patient from dying a dignified death, free of unnecessary pain and suffering. Many reviews of hospice are available in the medical literature. Here, we will focus on describing the role of the pharmacist within the interdisciplinary hospice team (IDT).
In the first installment of this series on Conquering the Cancer Care Continuum, we discussed the difference between palliative care delivered concurrently with interventional cancer therapy versus palliative care in the setting of hospice. Here, it was essential to emphasize that good supportive care should be introduced as early in a patient’s diagnosis as possible, as studies have shown that it can ease the burdens of patients with cancer and allow them to focus their attention and energy on the management of their diagnosis, leading to improvement in cancer outcomes and quality of life. However, once a patient meets the criteria for hospice, ie, a terminal illness with less than 6 months to live if the disease runs its normal course, good palliative care should not stop; rather it should become the sole focus for that patient.1
Here lies one of the primary pitfalls and greatest misunderstandings of the hospice movement. All too often, even as healthcare providers, we speak of hospice as a place where patients with terminal illnesses go to die. Instead, we should stress that hospice represents a philosophy of care that is most simply stated as “caring, not curing.”2 When teaching pharmacy and medical students and residents, I additionally emphasize the World Health Organization (WHO) definition of palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering.…”3 While this definition is pertinent in all stages of illness, I often feel that it is most applicable for patients and their families as they prepare for hospice care.
Hospice and the Role of the Pharmacist
As of 2012, it was estimated that 5300 hospice programs provided care to more than 1.65 million patients, approximately 37% of whom had a diagnosis of cancer, in the United States alone.2 Each of these hospice programs is required by Medicare regulations to maintain an IDT composed of a physician, a registered nurse, a social worker, and a pastor or other counselor in order to deliver the goals of palliative care described by the WHO. In addition, Medicare requires that a pharmacist be employed by or contracted with the hospice agency to ensure appropriate drug ordering, storage, administration, etc. While there is a necessary drug dispensing role filled by pharmacists who work with hospice programs, many pharmacists in this setting function in an advanced practice role that involves the 7 key responsibilities identified in a vision statement first formalized in a 2002 publication from the American Society of Health-System Pharmacists (ASHP).4 They include:
- Assessing the appropriateness of medication orders and ensuring the timely provision of effective medications for symptom control.
- Counseling and educating the hospice team about medication therapy.
- Ensuring that patients and caregivers understand and follow the directions provided with medications.
- Providing efficient mechanisms for extemporaneous compounding of nonstandard dosage forms.
- Addressing financial concerns.
- Ensuring safe and legal disposal of all medications after death.
- Establishing and maintaining effective communications with regulatory and licensing agencies.
Now more than a decade after the publication of this position statement, it is worthwhile to evaluate how successful ASHP was in advocating for the role of the pharmacist as an integral member of the hospice IDT. A recent study by Latuga and colleagues attempted to address this issue by surveying hospice pharmacists and administrators who are members of the National Hospice and Palliative Care Organization.5 Following the trend of pharmacists who have completed extensive clinical training and assumed more clinical responsibilities in other areas of medicine, this study noted that >50% of pharmacists involved in hospice care maintained clinical activities including “development of drug use protocols, formal and over-the-counter recommendations for symptom management, development of the hospice’s standing orders, ability to initiate standing orders, on call for consultation, and provision of drug information.” It is important to note that there was widespread agreement on the role of the pharmacist between hospice administrators and what was self-reported by the pharmacists surveyed. These findings serve to reinforce the expanding role of the pharmacist on multidisciplinary teams across medical specialties as the drug therapy expert.
The inclusion of a pharmacist on the hospice IDT to manage medication-related issues allows other healthcare providers to focus principally on the roles they have been trained to perform rather than having to take on this additional responsibility. This is important in light of a Medicare policy requiring patients enrolled in hospice care to undergo medication reviews upon admission and every 14 days in order for the program to continue receiving reimbursement for services provided.6 Interestingly, Medicare does not require these medication reviews to be conducted by pharmacists, only requiring that this rule is met by any individual who has “education and training” in medication management.5 In hospice programs where a pharmacist is not available on a daily basis, this role is most commonly fulfilled by nurse case managers whose time may be better utilized in a direct patient care capacity.
Pharmacists also have a notable impact on drug accountability within hospice care organizations. Given that many patients nearing the end of life are receiving treatment with narcotic medications to manage pain and discomfort, FDA oversight requires records to be meticulously maintained regarding the acquisition and dispensing of these controlled substances. Furthermore, after death these medications must be disposed of in a way that is appropriate, given their hazardous waste category, and in full compliance with state and federal law. Pharmacists are the most educated healthcare providers with regard to laws providing oversight of medication usage and thus should be administratively responsible for drug accountability in a hospice organization.
With HW’s complaints of severe pain, he was prescribed fentanyl transdermal patches and concentrated oral morphine sulfate liquid. The family was instructed on dose titration by hospice nurses and pharmacists, and HW peacefully passed away 10 days after enrollment in hospice.
Along with success achieved related to clinical practice responsibilities, it is important for pharmacists involved in palliative care and hospice to recognize that a broader impact can still be achieved by becoming a more integrated member of the IDT. One of the greatest barriers for pharmacists in this setting, as identified in the study by Latuga and colleagues, is in the area of education. Most pharmacists identified a lack of postgraduate training (23% completing postgraduate year 1 [PGY-1] residencies and 5% completing PGY-2 residencies in palliative care). In addition, very few pharmacists had attained board certification (an additional measure of expertise not required for licensure), and few had completed certification programs in geriatric medicine. There has been a marked increase in the number of physicians seeking board certification in palliative care over the past decade, and if pharmacists wish to further expand their role in this area, additional training will be essential.
In our practice, we often define 3 categories of cancer patients. Category 1 involves patients treated with intent to cure. Some category 1 patients become category 2 patients, whose goal shifts from cure to living longer and better. All category 2 patients ultimately become category 3 patients, for whom our job is to ensure that resources are available, including hospice, to allow them to be made comfortable and their supportive care needs addressed. As an oncology clinical pharmacist, I am not directly involved in hospice care, but I am occasionally called upon by colleagues working with hospice organizations to provide information on specific patients to allow for continuity of care. More commonly, I am involved in the initial medication management planning so that a patient’s needs are addressed to the best of our ability before admitting that patient to hospice care. I consider it a great honor and privilege as a member of a multidisciplinary cancer care team to be invited into one of the most intimate moments of a patient’s life when end-of-life planning is being undertaken. If our job is done well, these moments should focus not only on the life of the patient we have treated but also on attending to the needs of the family so that they may later feel peace knowing that all reasonable treatment options were considered and their family member was treated with dignity until the last moments of life.
- Centers for Medicare & Medicaid Services. Medicare Hospice Benefits. www.medicare.gov/Pubs/pdf/02154.pdf. Accessed April 6, 2013.
- National Hospice and Palliative Care Organization. NHPCO Facts and Figures: Hospice Care in America. www.nhpco.org/sites/default/files/public/Statistics_ Research/2012_Facts_Figures.pdf. October 2012. Accessed April 1, 2013.
- World Health Organization. WHO Definition of Palliative Care. www.who.int/cancer/palliative/definition/en/. Accessed April 6, 2013.
- American Society of Health-System Pharmacists. ASHP statement on the pharmacist’s role in hospice and palliative care. Am J Health Syst Pharm. 2002;59:1700-1703.
- Latuga NM, Wahler RG, Monte SV. A national survey of hospice administrator and pharmacist perspectives on pharmacist services and the impact on medication requirements and cost. Am J Hosp Palliat Care. 2012;29:546-554.
- Department of Health & Human Services. Centers for Medicare & Medicaid Services. Medicare and Medicaid Programs: Hospice Conditions of Participation. http://edocket.access.gpo.gov/2008/pdf/08-1305.pdf. Accessed April 7, 2013.