Palliative medicine is a medical subspecialty that is concerned with comfort care during illness, including pain relief, psychological and social relief due to medical illness, and helping loved ones cope with a family member’s illness. Palliative medicine is interested in a “whole person” approach to care, to help patients achieve better quality of life and comfort during serious illnesses. Palliative care may be offered at the same time as treatment designed to cure a disease.
Hospice is a form of palliative care given to patients who are no longer pursuing cure for an illness and have been given six months or less to live. The palliative care/hospice team is committed to helping a patient navigate through the medical system, make decisions that coincide with their goals for quality of life and comfort, and manage side effects of other courses of treatment. Members of the team may include a physician, nurse, social worker, chaplain, pharmacist, dietitian, physical therapist, volunteers, and other doctors involved in the patient’s care. Some examples of goals a patient may have include better pain management, being able to enjoy a child’s piano recital without nausea, or better control of anxiety related to their medical diagnosis (American Academy of Hospice and Palliative Medicine).
The American Board of Medical Specialties officially recognized hospice and palliative medicine as its own medical subspecialty in 2006. To become a board certified hospice and palliative care physician, a student must complete four years of medical school. They will then complete a residency, including board certification, in one of ten specialties: internal medicine, family medicine, emergency medicine, physical medicine and rehabilitation, pediatrics, obstetrics and gynecology, surgery, radiology, anesthesiology, or psychiatry and neurology. The doctor will then finish a 12 month fellowship in hospice and palliative medicine, pass an examination, submit letters about their ability to practice hospice and palliative medicine, and obtain an unrestricted license to practice in the United States.
To earn a certificate of added qualification (CAQ) for hospice and palliative care medicine with the American Osteopathic Association (for doctors having a doctor of osteopathy or DO), a doctor must first earn board certification in one of four specialties: family medicine, internal medicine, physical medicine and rehabilitation, or neurology and psychiatry. The doctor must then complete a 12 month fellowship in hospice and palliative care medicine. They must then pass an examination and prove clinical competence by turning in a letter from the director of their residency (American Academy of Hospice and Palliative Medicine).
History of hospice and palliative care
Providing care to the dying was in the purview of religious institutions for centuries. The Crusaders in the 11th century are believed to have started the first houses to care for the dying. In the 1300s, the Knights Hospitaller, a medieval Catholic military order, set up a home whose purpose was to provide refuge for travelers and care for the dying. The Irish Religious Sisters of Charity started Our Lady’s Hospice in Dublin in 1879 to care for patients dying of tuberculosis or cancer. They also opened several similar facilities in other countries, including St. Joseph’s Hospice in London, which is where Cicely Saunders, founder of the modern hospice movement, first saw the concept (Lutz, 2011).
Dame Cicely Saunders (1918-2005) was the daughter of well-off British parents who originally disapproved of her desire to become a nurse. However, the Second World War started and Saunders became a student nurse in spite of her parents’ disapproval. She was discouraged from continuing her nursing studies due to a back problem, so she instead became a social worker. While performing her duties as a social worker, she cared for a dying Polish Jewish immigrant named David Tasma. They fell in love and discussed her opening a home to help the dying find peace during their last days. He left her £500 with the words, “I’ll be a window in your home.” In the hospice she eventually founded, there is a window dedicated to David Tasma (Richmond, 2005).
Saunders then worked as a night nurse for orthopedic patients before deciding that she needed to become a physician in order to achieve her goal. She was accepted into medical school at age 33. After finishing, she got a research scholarship to study pain management in the terminally ill and worked at St. Joseph’s Hospice, run by the Irish Religious Sisters of Charity. It was at St. Joseph’s that Saunders implemented a new idea for pain control: “constant pain needs constant control.” She stated that patients should be given regular pain relief instead of waiting until their pain returned to treat it. She argued that regular pain relief would alleviate fear and anxiety associated with the return of pain and less pain medication would be needed overall. She also advocated for the use of medications to relieve other problems of dying patients, including nausea, constipation, bedsores, difficulty breathing, and depression. Saunders read widely on death and dying, including the views of Elisabeth Kubler-Ross, who stated that there are five stages of dying: anger, denial, bargaining, depression, and acceptance (Richmond, 2005).
She raised funds for and contributed her own money to eventually open the first modern hospice in 1967. St. Christopher’s Hospice cares for patients with all diagnoses, of any social class, and of any religious affiliation. Saunders and her husband both eventually died at St. Christopher’s (Richmond, 2005).
Saunders brought attention to the need for hospice and palliative care to the United States in a lecture at Yale University in 1963. A bill recommending that hospice services should be covered by Medicare was introduced to and rejected by the United States Congress in 1974. However, the bill sparked discussion which would eventually lead to the formation of a task force to investigate further. A hospice benefit was finally passed in 1982. Under this bill, benefits are provided to patients who have been certified as having less than six months to live by two different physicians. In the event the patient lives longer than six months, they are re-evaluated. When enrolling in the Medicare Hospice Benefit, the patient waives future hospitalizations (except as deemed necessary for hospice benefits, including short-term respite care for caregivers) (Lutz, 2011).
The International Association for Hospice and Palliative Care (IAHPC) is a non-profit organization formed in 1980, with the goal of encouraging countries to develop hospice and palliative care programs in such a way that is respectful to cultural customs and values and is within their resource availability. Some of the ways in which this is done is by offering scholarships to meetings with preference given to individuals from developing countries, and traveling fellowships given to professionals who are traveling to a developing country to teach palliative care. The emphasis is on helping the country develop a program themselves (International Association for Hospice and Palliative Care).
Hospice and palliative care is designed to help patients by
Controlling pain
Decreasing side effects of medical therapy, such as nausea and vomiting
Providing psychological services to help feelings of anxiety and depression
Maintaining proper nutrition
Discussing and understanding the patient’s family’s concerns
Supporting the patient’s primary caregiver (including respite care so that the primary caregiver has a chance to rest)
Addressing and including spiritual needs in the plan of care
Helping put financial affairs in order
Getting legal documents in order, including a will, advanced directive (what types of medical treatment the patient does and doesn’t want), and medical power of attorney (someone who can make medical decisions for the patient if the patient is unable to do so)
Navigating the medical system
Explaining the risks and benefits of different medical treatment options
Bereavement counseling to family members after the patient’s death
(American Academy of Hospice and Palliative Medicine)
Impacts of palliative care on those who provide it
The psychological impact of working with patients who are terminally ill and in the process of dying has been hypothesized to cause burnout. Burnout can be broken down into three components: feeling of low personal accomplishment, emotional exhaustion, and depersonalization (withdrawal from and cynicism about relationships) (Rizo-Baeza et al., 2017).
Several self-care concepts have been found to help with burnout for palliative care professionals. In particular, a study using a 10-week on the job intervention with palliative care professionals found that guided meditation was helpful. The study participants reported improvement in emotional exhaustion, a feeling of personal accomplishment, anxiety levels, stress levels, and joy at work. In addition, since the team did it together, improved team communication was also identified (Orellano-Rios et al., 2017).
Clinicians (including physicians and non-physician clinicians)
A survey study done of the clinician members of the American Academy of Hospice and Palliative Medicine revealed characteristics of burnout in 62% of those who responded (overall response rate of 30%). The most common reason for burnout was emotional exhaustion. Burnout was more common among those who worked longer hours, those who worked weekends, those in smaller organizations, and those younger than age 50. The most commonly reported measures for self-care to prevent burnout were relationships and taking vacations (Kamal et al., 2016).
Thirty hospice and palliative medicine physicians responded to a survey with advice for their peers on how to avoid burnout. The most common strategies were maintaining physical health and wellbeing, professional relationships, talking with others, hobbies, and personal relationships. The authors suggest that clinicians should be prepared to employ several different strategies as an overall method of coping (Swetz et al., 2009).
Nurses
A recent Mexican study found that about a third of surveyed nurses were experiencing some aspect of the three dimensions of burnout. More burnout was seen among single parents, a medium to high workload, a self-care deficit, working more than eight hours per day, and lack of professional relationships (Rizo-Baeza et al., 2017). Another study found that nurses had higher levels of the depersonalization and emotional exhaustion aspects of burnout. The context in which burnout was the worst was home-based palliative care (Parola, et al., 2017).
Volunteers
Many palliative care/hospice services use the services of trained volunteers to assist in providing care for their patients. Volunteers give emotional support, help communicate between patients and caregivers, act as companions, and serve as respite for the primary caregivers (give the primary caregivers a break from caring for the patients).
A small 2007 study found that many who volunteer with palliative care did so after experiencing the death of a loved one themselves. Most said it was a worthwhile activity which they would encourage others to try. Many reported that volunteering in palliative care helped them become more accepting of their own mortality and keep things in perspective. They reported engaging in a number of activities to prevent burnout, including reading, listening to music, socializing, and taking time off when needed (Claxton-Oldfield, 2007).
Volunteers report that they feel privileged to work with palliative care patients and feel that they receive more than they get. Volunteers report many benefits to themselves from the work, including a greater appreciation for the truly important things in life, personal growth, and feeling that they are able to make a positive impact on the lives of others (Claxton-Oldsfield, 2015).
Current research in hospice and palliative care
Access to Care
A 2016 study showed that access to inpatient (in the hospital) palliative care is expanding across the United States. Most large hospitals with 300 beds or more had inpatient palliative care services. Predictors that a hospital would have inpatient palliative care services included not-for-profit or public status and being situated geographically in New England, the mid-Atlantic or Pacific (Dumanovsky et al., 2016).
Telehealth (using computer based technology to videoconference between medical providers and patients) is being investigated as a way to improve access to palliative care services for patients who live in rural or remote areas (National Palliative Care Registry).
Cost Savings
A 2013 study found that Medicare patients enrolled in a hospice service saved Medicare thousands of dollars when compared to patients not enrolled in hospice. For patients enrolled in hospice 53-105 days prior to death, there was a savings of $2561. For patients enrolled 1-7 days prior to death, the savings was $2650. For patients enrolled 8-14 days prior to death, the savings was $5040. For patients enrolled 15-30 days prior to death, the savings was $6430. All savings was per hospice patient enrolled. The authors called for Medicare to enroll patients who are eligible for hospice and desire the service in a timely manner (Kelley et al., 2013).
A 2016 study showed that among patients with advanced cancer diagnoses who were enrolled in palliative care earlier, the number of hospital admissions, intensive care admissions and emergency room visits were significantly decreased in the last month of life. Cost of inpatient care in those enrolled in palliative care earlier (more than 90 days prior to death) was $19,607 per patient, while cost of inpatient care of those enrolled in palliative care later (less than 90 days prior to death) was $25,754 (Scibetta et al., 2016).
Palliative Care and Quality of Life
A small study from the Mayo Clinic showed that in patients receiving intense therapies for potentially curable cancers, palliative care helped the patients finish the full course of therapy. In this study, many of the patients underwent treatment that included surgery, chemotherapy, radiation, or a combination of those. Potential side effects of the treatments included nausea, diarrhea, fatigue, pain, and feeling down, among others. The intervention being tested was group therapy occurring two to three times per week. The sessions were led by a psychologist or psychiatrist (with the help of other people, such as social workers, if needed), and included stretching exercises led by a physical therapist, and guided relaxation. Patients who participated in these sessions were more likely to complete the full prescribed treatment for their cancer and less likely to be hospitalized. The authors concluded that participation in this type of intervention, which focuses on quality of life measures and exercise, may increase the number of patients who finish their full treatment and reduce hospitalizations. They pointed out that side effects and lessened quality of life are reasons patients stop recommended treatment. This study was limited by its small size and use of patients with only GI cancers (Cheville et al., 2015). Larger studies are needed to better understand the role of palliative care in cancers of other organ systems, as well as in patients with other serious illness.
Satisfaction with Palliative Care Received
A 2008 study of family members of patients who had received palliative care in the last month of life reported satisfaction with all aspects of care, especially emotional support and better communication between medical staff and the patient and family members (Casarett et al., 2008).
A 2015 review of available literature found that inpatient palliative care was associated with a better patient perception of emotional support, higher patient satisfaction scores, and better communication between the patient and medical staff. Inpatient palliative care was also associated with less patient reports of pain, difficulty breathing, and nausea (Smith, Bernacki, and Block, 2015).
Quality Measures for Palliative Care
The National Consensus Project for Quality Palliative Care has published domains for quality in palliative care, including pain management, management of shortness of breath, following patient’s expressed desires for his/her care, and evaluation of care received by the family after the patient’s death (National Consensus Project for Quality Palliative Care). Current research on quality measures include defining terms in a measurable way, determining which quality metrics are most often met and which are not, and determining whether the environment where palliative care (inpatient versus home-based, city or rural) takes place changes quality metrics. Other research has found that physical symptoms are more commonly addressed than psychosocial symptoms are (National Palliative Care Registry).
Pain and Symptom Management
The National Palliative Care Research Center is supporting the use of National Institute of Health funding to better understand the reasons for and how to better control the symptoms of serious illness, such as sleeplessness, loss of appetite, breathlessness, pain, confusion, nausea and vomiting, and depression. There is little research in this area as symptoms have traditionally been viewed as a map leading to a diagnosis which, when cured, will make the symptoms disappear. However, in the case of terminally ill patients, the symptoms do not disappear, as cure is not possible. This grant is for research on new methods of symptom control and better understanding of the scientific mechanism of action for these symptoms (National Palliative Care Research Center).
Communication
Communication between healthcare professionals and patients and family members is an important part of any medical specialty, but is especially important in planning end-of-life care. Training on strategies to foster good communication is not always provided to healthcare professionals who must deliver bad news (such as a diagnosis of cancer), discuss treatment goals with the patient and family, and make difficult treatment decisions (such as when the current treatment is futile, when there are no further treatment options available, or when to offer enrollment in studies or experimental treatment). The National Palliative Care Research Center is interested in improving communication between healthcare professionals and families by conducting research that identifies strategies for enhancing communication (National Palliative Care Research Center).
Models of Health Care Delivery
The National Palliative Care Research Center, in partnership with Center to Advance Palliative Care, is looking for better ways to integrate health care systems so that patients are not shuffled from facility to facility. They argue that the current system with Medicare as the payer is set up to serve patients with a clear or known prognosis, which is a minority of those with serious, life threatening illnesses. They also point out that some of the care needed by these patients is not covered by Medicare (e.g., help getting to and from doctors’ appointments, shopping, housecleaning, and laundry services). They are looking for novel ways to make this stage of life easier for patients and families (National Palliative Care Research Center).
The need for palliative care and hospice services is expected to increase as the baby boomer population ages. While some would think the field is a difficult one in which to work, many of those who do work in hospice and palliative care medicine find it to be rewarding, and families and patients find it helpful.
American Academy of Hospice and Palliative Medicine, & Piotrowski, M. (n.d.). Compassionate Care at any stage of an illness. Retrieved September 20, 2017, from http://palliativedoctors.org/
American Academy of Hospice and Palliative Medicine. (n.d.). AOA Certificate of Added Qualification in Hospice and Palliative Medicine. Retrieved September 20, 2017, from http://aahpm.org/certification/aoa-caq
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Cheville, A. L., Alberts, S. R., Rummans, T. A., Basford, J. R., Lapid, M. I., Sloan, J. A., . . . Clark, M. M. (2015). Improving Adherence to Cancer Treatment by Addressing Quality of Life in Patients with Advanced Gastrointestinal Cancers. Journal of Pain and Symptom Management,50(3), 321-327. doi:10.1016/j.jpainsymman.2015.03.005
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Claxton-Oldfield, S. (2014). Hospice palliative care volunteers: The benefits for patients, family caregivers, and the volunteers. Palliative and Supportive Care,13(03), 809-813. doi:10.1017/s1478951514000674
Dumanovsky, T., Augustin, R., Rogers, M., Lettang, K., Meier, D. E., & Morrison, R. S. (2016). The Growth of Palliative Care in U.S. Hospitals: A Status Report. Journal of Palliative Medicine,19(1), 8-15. doi:10.1089/jpm.2015.0351
Kamal, A. H., Bull, J. H., Wolf, S. P., Swetz, K. M., Shanafelt, T. D., Ast, K., . . . Abernethy, A. P. (2016). Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S. Journal of Pain and Symptom Management,51(4), 690-696. doi:10.1016/j.jpainsymman.2015.10.020
Kelley, A. S., Deb, P., Du, Q., Carlson, M. D., & Morrison, R. S. (2013). Hospice Enrollment Saves Money for Medicare And Improves Care Quality Across a Number of Different Lengths-Of-Stay. Health Affairs,32(3), 552-561. doi:10.1377/hlthaff.2012.0851
Lutz, S. (2011). The history of hospice and palliative care. Current Problems in Cancer,35(6), 304-309. doi:10.1016/j.currproblcancer.2011.10.004
Orellana-Rios, C. L., Radbruch, L., Kern, M., Regel, Y. U., Anton, A., Sinclair, S., & Schmidt, S. (2017). Mindfulness and compassion-oriented practices at work reduce distress and enhance self-care of palliative care teams: a mixed-method evaluation of an “on the job “program. BMC Palliative Care,17(1). doi:10.1186/s12904-017-0219-7
Parola, V., Coelho, A., Cardoso, D., Gea-Sanchez, M., Blanco-Blanco, J., & Apóstolo, J. (2016). The prevalence of burnout in health professionals working in palliative care. JBI Database of Systematic Reviews and Implementation Reports,14(3), 45-50. doi:10.11124/jbisrir-2016-2633
Rizo-Baeza, M., Mendiola-Infante, S. V., Sepehri, A., Palazón-Bru, A., Gil-Guillén, V. F., & Cortés-Castell, E. (2017). Burnout syndrome in nurses working in palliative care units: An analysis of associated factors. Journal of Nursing Management. doi:10.1111/jonm.12506
Scibetta, C., Kerr, K., Mcguire, J., & Rabow, M. W. (2016). The Costs of Waiting: Implications of the Timing of Palliative Care Consultation among a Cohort of Decedents at a Comprehensive Cancer Center. Journal of Palliative Medicine,19(1), 69-75. doi:10.1089/jpm.2015.0119
Smith, G., Bernacki, R., & Block, S. D. (2015). The Role of Palliative Care in Population Management and Accountable Care Organizations. Journal of Palliative Medicine,18(6), 486-494. doi:10.1089/jpm.2014.0231
Swetz, K. M., Harrington, S. E., Matsuyama, R. K., Shanafelt, T. D., & Lyckholm, L. J. (2009). Strategies for Avoiding Burnout in Hospice and Palliative Medicine: Peer Advice for Physicians on Achieving Longevity and Fulfillment. Journal of Palliative Medicine,12(9), 773-777. doi:10.1089/jpm.2009.0050
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