End Of Life

It is important that we have a common understanding of what hospice care is before answering this question. Hospice provides care for a patient who has a terminal diagnosis, with expectation of a prognosis of 6 months or less, and is usually no longer seeking curative treatment. Hospice focuses on relieving symptoms and supporting patients and is provided in the home, in a residential setting, or in the hospital. Another way of looking at it, is that hospice care provides palliative care for those approaching the last stages of life. I find that the best first step in addressing discussions about hospice with patients and families is to first understand what they know about their underlying diagnosis, their treatment options and how their illness is impacting their quality of life. I want to also understand what is most important to a patient and family when the prognosis is limited. Once I know what a patient and family hope to achieve and what is most important to them I can best help to guide treatment and make use of hospice services to help maximize their quality of life and help them to achieve their goals.

Patients may not address “end-of-life issues” because of stress and anxiety. In my experience, I have found that patients are often under more stress and anxiety when discussions about prognosis and goals of care have not occurred. People approach a cancer diagnosis and treatment differently, influenced by their personalities, life experiences, education as well as personal and spiritual beliefs. It is important to first understand how a patient is coping with and understanding their illness and prognosis. Stress and anxiety often arise from misunderstanding and/or fear about the underlying illness. If this is the case, starting a dialogue with the patient, to clarify misconceptions and openly address patient and family fears, will help to dissipate stress and anxiety and allow an open discourse about prognosis and patient wishes for care at the end of life.

Every medical oncologist wants to cure their patients. The problem has been when to stop. The general dictum that has guided medical oncology for 50 years can be summed up as “if some is good, more is better”. This regrettably may not be true. As a rule, patients will manifest benefit from therapy within 2-3 cycles. Thereafter, treatment is continued until complete remission, failure to respond, or intolerable toxicity. We witnessed the most glaring example of over treatment during the era of bone marrow transplantation for solid tumors which proved toxic and ineffective for most cancers, the exception being leukemias, myelomas and some lymphomas. Our preference is to use the right drugs from the start to achieve the best response with the least toxicity. Depending upon the tumor type, we complete treatment with 2 additional cycles beyond complete remission or in the highest risk cases, we may suggest a form of maintenance treatment. All of these therapies are administered with a very close attention to quality of life.

It is very common for a family to be faced with making difficult decisions about end of life care. The palliative care service can be helpful in this situation. Palliative care services are experts at being sure the right medications are being used to provide comfort and awareness, coordinating family meetings, and discussing prognosis. They can also assist in weighing the benefits or risks of a life supporting therapy such as going on a ventilator or dialysis. Having an advanced directive that designates a surrogate decision maker is important but many do not have one when a crisis occurs.

Cancer care should be evidenced based, integrated with palliative care, and be the model for patient-family centered care. Cancer not only affects the individual but also the family. Studies have shown that when palliative care is introduced at an earlier time in the care of lung cancer, the patients with palliative care as well as their usual oncology care have better quality outcomes and live longer than those without a palliative care provider. I am sure this intervention would also apply to many other types of cancer. So the best way to improve quality and reduce spending is the integration of oncology, primary, and palliative care.

There have been amazing advances in how we manage most cancers over the past twenty years. People who would have had a very limited life expectancy in the past now are living for many years, even with later stages of cancer. We have also developed technologies that carry a heavy burden at the end of life. We can keep people alive on a variety of “machines” without really adding to their meaningful life. Many patients tell me “I want everything done to stay alive”. That is very understandable; however it must be balanced with a discussion of the other things that are important to them. Advanced directives are a way to have that discussion and avoid unnecessary suffering for patients and families.

Hospice care can be a very powerful support for patients and families. It is worth exploring. Because the cost and services provided for hospice may vary from organization to organization, it can be worth doing your homework before hospice is needed.

Hospice care can take place in a hospice building or within a hospital, or hospice care workers may come to the home of the person receiving services. In an institutional setting, hospice patients receive round-the-clock medical care. Patients enrolled in home hospice receive most of their care from caregivers, not medical professionals.

For more about hospice, see our article: http://www.cfah.org/hbns/preparedpatient/Vol4/Prepared-Patient-Vol4-Issue3.cfm