As mentioned before, there is no universal reimbursement mechanism for palliative care, as there is with hospice. This may impede the ability for a patient to get palliative care from the time of initial diagnosis. Second, not all health care systems have a palliative care team or service, particularly the smaller and more rural hospitals. If palliative care is not available or not covered, patients will not be able to access it. This is partly why the first image in Figure 4.1 is what tends to happen in the illness trajectory. If electing hospice care means stopping all curative treatments, then patients and families will not opt for that until they are told that there is nothing else medically that can be done for them. Palliative care may be the best option for the patient at this time. Palliative care may be the better option ini- tially for patients who have a serious illness which is still responding to medical treatments. An advantage of electing hospice care is that patients who have minimal chance of pro- longing their length of life due to their poor prognosis still have an option for care that will focus on their quality of life. Often people who have a life-threatening illness are told by their providers that there is nothing else medically that can be done to cure their illness. These words often make the patient feel as though they are stuck with dealing with their illness alone. They wonder what will happen to them if nothing more medically can be done This can be a frightening thought, and one of advantages of hospice is that patients do not have to feel alone. Hospice can provide that support 24 hours a day, 7 days a week, and often just knowing that the nurse is just a phone call away can give significant peace of mind to patients and their families. Another advantage of hospice care are the various services that hospice can provide to patients. In home health care, hospice patients can have the most hours of home health aide services, which may be essential at the end of life in
order to help alleviate some of the burden of care from the family. The hospice benefit also pays for all medications and medical equipment needed to maintain and maximize patient comfort. This includes home oxygen which for patients who are not on a hospice program and have to meet a specific criteria for oxygenation status in order to be eligible. On hos- pice, patients have an entire team of clinicians who work together to plan and provide an individualized plan of care. Using an interdisciplinary approach enables patients to receive a holistic, high quality plan of care. Determining which one of these two formal end of life programs patients should use requires understanding the patient’s individual goals and preferences for care. Once the clinician is aware of what the patient hopes in terms of their illness, then they can best advocate for their patient.
Although hospice and palliative care are the most frequently used services among patients who are at the end of life, it is possible to not use either one. Students often ask whether it is possible for patients to have what is considered a “good death” without being involved in a formal program such as hospice. Hospice and palliative care can assist patients and families to meet the various needs they will encounter during their final months of life, but are not mandatory. It is possible for patients to still have their goals and preferences for care met without hospice or palliative care involvement. However, patients would have to be well equipped with the knowledge of what they hope to accomplish and have healthcare pro- fessionals who are willing to listen to them and provide them that care. Patients who elect to not use either service should utilize a clinician with specialized knowledge in the areas that commonly require attention at the end of life, such as symptom management and psy- chosocial support.
What You Should Know
• Hospice and palliative care are often misunderstood to be the same thing, but they are not.
• Both hospice and palliative care provide specialized care services aimed to improve overall quality of life for patients with serious illnesses.
• Although palliative care is ideally instituted alongside curative care when a person is diagnosed with a serious illness, hospice care is reserved for persons for whom curative medical treatments are no longer an option.
References
Centers for Medicare & Medicaid Services. (2013).Medicare hospice benefits. Retrieved from http://www.medicare.gov/pubs/pdf/02154.pdf
Center to Advance Palliative Care. (2011). Building a palliative care program. Retrieved from http://www.capc.org/building-a-hospital-based-palliative-care-program/
End of Life Nursing Education Consortium (2010).ELNEC – core curriculum training pro-
gram.City of Hope and American Association of Colleges of Nursing. Retrieved from http://www.aacn.nche.edu/ELNEC
Herbst, L. (2004). Hospice care at the end of life.Clinics in Geriatric Medicine, 20,753-765. Jennings, B., Ryndes, T., D’Onofrio, C., & Baily, M. A. (2003). Access to hospice care:
Expanding boundaries, overcoming barriers.Hastings Center Report, 33,(2), S3-S7. Lynn, J. & Adamson, D.M. (2003).Living well at the end of life: Adapting health care to seri-
ous chronic illnesses in old age.RAND Corporation: Santa Monica, CA. Retrieved from http://www.rand.org/pubs/white_papers/WP137.html
Palliate [Def. 1]. (n.d.). Merriam-Webster Online. In Merriam-Webster. Retrieved from http://www.merriam-webster.com/dictionary/citation
National Hospice and Palliative Care Organization. (2014). Hospice and palliative care. Retrieved from http://www.nhpco.org/about/hospice-care
World Health Organization. (2014).WHO definition of palliative care. Retrieved from http://www.who.int/cancer/palliative/definition/en/