Hospice Care and Quality of Life

What is hospice care?  the word “hospice” comes from the Latin hospitium which the Romans used to describe as a place where guests were received with lodging and hospitality and they are believed to have existed since there were efforts to care for the sick and dying.  The pioneer of the modern hospice movement in this country was Dr. Florence Wald, who joined a group that formed Hospice, Inc. of New Haven, Connecticut, the first hospice in the U.S.  [From Hospice: Past, Future and Ethical Considerations, by Amy Corcoran and Jennifer Kapo in The Penn Center Guide to Bioethics at 775 (2009: Springer).

Why is it still so difficult for many people to talk about hospice care? I think the answer is simple – it has to do with our lingering taboo against open communication about death and the dying process.  I think this taboo is long overdue for being tossed out of our culture, and that is the reason for my writing about it.  Are you wondering about how hospice care is accepted in mainstream medicine in the U.S.? More information on the Medicare hospice benefit is available here  and did you know that over 90% of hospices in the US are certified by Medicare?

What is the difference between hospice and palliative care?  Both are focused on maintaining quality of life for the patient, and treating the person as an individual with dignity, and not focusing as a set of medical challenges to be overcome.   According to the National Hospice and Palliative Care Organization (NHPCO), hospice focuses on caring, not curing, and the care is usually provided in the person’s own home if possible, and in other instances may be provided in a hospital, nursing home, or freestanding hospice facility. The stated focus of hospice care is based on the belief that each of us has the right to die pain-free and with dignity, and to provide assistance to our loved ones to allow us to do so.  Hospice care often involves helping a person be comfortable by addressing pain management as well as physical and emotional suffering, and typically a team-based approach (doctors, nurses, social workers and chaplains) provide care for not just the individual but for their loved ones as well.  In addition to Medicare, hospice care is covered under most private insurance plans.

Palliative care is the medical term used for the kind of care provided for dying people in hospice care, but it also encompasses care at any stage of an illness or condition that addresses quality of life and managing physical and emotional pain and suffering associated with the illness. Unlike hospice care, palliative care can be appropriate for persons in any stage of a disease, it is care designed to relieve symptoms without having a curative effect on the underlying disease or condition.  Both hospice and palliative care focus on a person’s quality of life, but they are not the same type of care.

Searching for a cure at any cost and advocating heroic measures often take a steep toll in terms of quality of life.  It is a good idea to have a conversation about these matters in the context of making a durable power of attorney for health care or an advance directive.  If you are wondering about doctors in Colorado who provide palliative care, the Life Quality Institute  is a local organization that provides, among other things, educational presentations about end-of-life issues has a list of such providers available here.

Perhaps you are at a loss for what to say to a dying person, how to interact with them.  I liked the advice of Joan Halifax  who urges us to look beyond our own fears and into that person’s heart.  Her book, Being With Dying (published 2009is a beautiful work, and a pdf available here has some great ideas about how to use the gift of language to express ourselves, and the gift of presence to express compassion for a dying person.

I think my favorite book right now is The Four Things That Matter Most, by Ira Byock, M.D. (2004: Free Press).  Dr. Byock wrote the Foreward to Being With Dying, and he identifies the Four Things quite simply as:

Please forgive me.

I forgive you.

Thank you.

I love you.

Of course, the first thing he says after introducing these four things is not to wait until the end of someone’s life (often we have no idea when that will be) but rather that these things apply at any time during our lives.  They, like all the wisdom from many commentators on the end of life, have much relevance for the beginning and middle parts of our lives.  Can you imagine starting a conversation with a loved one with these words?  These words are powerful medicine!