As family physicians, we have the honor of providing care for an individual throughout the course of their life. We are often present at birth. And at death. We witness the joy of a baby entering the world. We are present and honored to witness the beauty of aging. Each stage of life comes with its own triumphs and obstacles. Throughout, we provide care for each individual to improve their health and enhance the quality of their life.
At some point, however, the end of life presents.
When a patient faces the final stages of life, the care provided by physicians shifts. We do all we can to ensure that autonomy is preserved. It is important that we put thought into how we would like to be cared for at the end. Many Americans die in hospitals or nursing homes. The medical care many patients are given at the end of their lives may not always align with their wishes.
- Therefore, it is important that families have these fundamental conversations with primary care physicians to ensure that the wishes of a patient are acknowledged and considered in planning care. These conversations should include the patient, their loved ones, and their health care provider(s).
Hospice care begins when patients are diagnosed with a terminal illness and are expected to live six months or less. When patients elect to enter hospice care, there is an acceptance of death.
- Hospice treatment is centered around treating symptoms, rather than the disease itself. Hospice care includes palliative care, spiritual care, family meetings, coordination of care that allows for access to professionals at any time, respite care for caregivers, and bereavement care for loved ones.
- Hospice care provides comfort measures to the patient and includes a family-centered approach. The care provided extends to family members even after their loved ones have passed.
We often hear the terms hospice case versus palliative care. What is the difference?
- Hospice care and palliative care do go hand-in-hand, by providing comfort in either hospital or home settings, but they are two separate things.
- The main difference is that palliative care can occur at any time in the disease course – with ongoing curative treatment for the disease process.
- In hospice care, however, there is no active or curative treatment, and the care approach is centered around symptom control.
- In hospice care, the treatment for the presenting disease stops. The focus shifts to effective pain management. It enables a patient to be present on their terms for the people they love. Hospice is the expression of patient choice. It enables medical experts to focus on pain management.
- Patients who enter hospice programs are more likely to have their pain controlled. They are often more satisfied with their end-of-life care compared to those who did not. Hospice patients are less likely to undergo additional testing or subjected to a medication they don’t need.
- It is important to note, patients do have the option to opt-out of hospice care at any time and to restart treatment if they wish to.
Hospice care does not mean that the patient is giving up or has lost hope. It is more a redefinition of hope and a way to manage expectations and re-set goals.
- It is difficult to make decisions at the end of life. Working with a primary care physician to consider a plan for the end of life has many benefits.
- A primary care physician may know the patient far better than medical specialists. A primary care physician is often well-placed to help create a plan that reflects the patient as a person.
Hospice enables terminally ill patients to have a say in their last weeks or months. In this sense, it is an expression of patient autonomy, enabling some control of a situation over which there would otherwise be little or none.
- Understanding how loved ones want to be cared for, painful though it may be, does provide an easier transition for the family in the long-term.
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