To physicians, hospice frequently symbolizes defeat. Referring a patient to hospice care can feel like admitting that disease has defeated years of training. In medical school, we are trained that the role of the doctor is to fight the disease and find the cure. As we battle against bacteria and cancerous cells, and it is easy to forget that despite it all, we are still dying. It is, therefore, comforting to know that there are healthcare providers who specialize in guiding people through the process of dying. As physicians, we need to reframe our thinking about hospice care from an admission of defeat to the inevitable conclusion of every person’s path. Hospice can play a similar role as that of a pediatrician: documenting milestones and charting a progression with anticipatory guidance for what will come next.
Fear associated with death can often be broken down into two categories: pain and the unknown. Hospice care seeks to alleviate both of these concerns for patients and their families. Pain is meticulously handled by many means of support: physical comfort, emotional counseling and, last of all, medicine. The idea of hospice providers as the angels of morphine is largely outdated. It has been replaced by a holistic model that seeks to comfort mind, spirit and body through interdisciplinary cooperation. Physical comfort methods include massage, music therapy and religious counseling. Solace is provided by reassuring patients that they are important as individuals even as the end-of-life approaches and helping them create lasting impressions on the world.
Medical management of pain is chiefly accomplished through the use of a long-acting pain medication with fast-acting analgesics for breakthrough pain. The approach is not unlike the treatment of diabetes with basal-bolus insulin. The ideology is to address the pain without making the patient numb and stuporous. This is a delicate dance of dosing and titration. The chief analgesic employed in hospice and palliative care is morphine in intravenous and oral forms. Morphine is relatively inexpensive and easily titratable. MSContin offers an extended release formulation to create a basal level of comfort. Pain control is targeted at allowing patients to achieve their goals with the acknowledgment of physical limitations. For example, if a patient wants to go to a play in the evening, they may be encouraged to rest during the daytime and then take a short-acting pain medication before leaving for the show.
Hospice educates patients and families on the steps of the dying process so that they do not come as a surprise. Certain patterns of behavior are expected and allow the family to gather loved ones and achieve a sense of closure when they are seen. While hospice can be provided in a nursing or inpatient facility, patients are typically cared for in their families’ homes. Allowing patients to be with their loved ones in privacy offers comfort.
Guidelines for hospice suggest that physicians refer patients to hospice care when the natural progression of their illness will lead to death within six months. It is important when talking to families about initiating hospice care that it is made clear that six months is not a set rule. Nurses report that patients will frequently live for longer than expected because they have been changed from a curative medical management plan to one that simply focuses on relieving symptoms. Patients have also been known to “graduate” from hospice after circumstances change and their health improves. While this is not a common occurrence, it is important to discuss all aspects of hospice with families in order to manage expectations.
Patients on hospice receive care from nurses and physicians at home so that they do not have to be shuttled from office to office. Hospice is a benefit under most insurance plans, including Medicare. It is important that a referring physician understand the reimbursement structure for hospice before choosing to make a referral. Insurance pays the hospice company a set amount per diem that must cover all of a patient’s medicines, medical equipment and the salaries of the staff that support them. This payment is generally around $190 a day for the first 60 days of service and then $150 a day from then on. With this in mind, doctors can choose medications according to the per diem payments.
When adult patients enter hospice, they are agreeing to discontinue curative care. Children are allowed to seek curative therapy and hospice at the same time. The combination of forbidding expensive treatment and curative treatment sometimes intersects to make patients who would benefit from hospice ineligible. An example might be a patient with colon cancer who is receiving chemotherapy not to cure the disease, but as a debulking agent to keep his colon from being occluded. This would also make ineligible a patient with COPD who is being given high-flow oxygen at such a rate that it is unable to be replicated at home.
I hope this overview of hospice care has provided future physicians with some insight into hospice care. Many families will be reticent and will not readily initiate the topic of hospice care with the physician because it feels like “giving up,” making it essential that physicians guide patients and families into these conversations. Primary care physicians can also make sure to address end-of-life care and advanced directives with all of their adult patients before the need arises. Having a plan of action can remove doubt when providing end-of-life care for a loved one, as there is no doubt what the patient desires.
Hospice care provides a gentle transition from life to death, and benefits patients, families and the health care system by giving patients comfortable care at home. It is important that we provide reassurance that dying is another stage of life. Society has distanced itself from the omnipresence of death at home that was common just a century ago. As more people spend the end of their lives in hospitals, it has decreased routine exposure to death, and Americans have become less familiar and less comfortable with the dying process. It is important that we encourage families that they have the ability to care for their dying loved one at home and share in their last days in the environment where they spent their life.