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!

National Healthcare Decision Day – Are You Ready?

Does It Matter How We Face a Health Crisis or the End of Our Life?  If you answered yes, like most Americans, then you may want to have that difficult conversation now – while you can, and put a plan in place to ensure that your preferences are known and that the pressure is taken off family members to decide in a vacuum.

Monday, April 16th marked the 5th Annual National Healthcare Decisions Day.  What is National Healthcare Decisions Day?      It is designed to educate the public and providers about the importance of advance care planning.  It promotes the idea that having these conversations and making plans to support having the preferences and choices carried out is taking care of each other.

Please don’t mistake this for a national “fill out a form” day.  This is not the message!  It is about appreciating the significance of talking to loved ones about health care scenarios and making preferences known.  The end result of this process is the documentation.

You can begin the process by asking yourself: “what kind of health care do I want if I have suffered a life-threatening traumatic injury, accident or face an illness that may be terminal or is likely to impair my ability to decide for myself?  These are not “unthinkable” scenarios, they happen every day whether we are aware of them or not.  While we cannot control many of the circumstances leading up to the illness or injury (when it is often too late to have the conversation), we can choose to make deliberate and informed choices about health care, and this will make it much easier for our loved ones to take care of us, instead of worrying about “what we would have wanted.”  A great form that is readily available to assist in thinking about these questions, scenarios, preferences and values is available from the University of New Mexico in pdf form.     This form is long but it is thorough and likely to cover situations that we otherwise wouldn’t consider.  Many of us use our personal experience as a reference point (“don’t let me end up like great-Grandma Jones who was kept alive for seven months . . . !”), but that should just be the starting point for the conversation.

How do I get started?

  1. Educate yourself – take a look at the Colorado Bar Association’s pamphlet about Advance Medical Directives.
  2. Think about what is important to you by using a tool like the Values History form or the American Bar Association’s Toolkit for Health Care Advance Planning
  3. If you have special concerns relating to your decisions, or need help getting family or loved ones involved in the process – get assistance!
  4. Pick a person (an agent or proxy) on whom you can rely to be your health care agent and make sure that any questions you have about how this arrangement works are addressed by legal and/or medical professionals.  Some basic questions about the difference between a financial and a health care power of attorney are answered in the Colorado Bar Association’s Senior Law Handbook   where you can also find good information about hospice and palliative care.
  5. When you have identified what you want, communicated with others and discussed your preferences, you will want to ensure that these will be carried out – so don’t forget the last step of making the documents!  Each state has its own unique laws, so while you may think that  a “one-size-fits-all” form you find is great, you may want to be sure that it will work in the way you want it to – so check with an attorney who focuses on elder law and these types of issues.

Difficult Conversations About End of Life – DNR vs. Health Care Power of Attorney

What many people don’t want to consider – is the prospect of when a person’s DNR/DNI (do not resuscitate/do not intubate) directions may come into conflict with what an agent under a health care power of attorney decides. When a surrogate overrides the patient’s stated wishes (for example, where the children’s interests in “saying goodbye” override a mother’s DNR wishes) Check out this very powerful video of two daughters recounting the difficult decisions they made regarding their mother’s health care.

This video highlights the slippery slope of medical intervention and not knowing when the intervention will end and a daughter’s grief about going against her mother’s wishes.  She poignantly describes her mother’s searching eyes which seemed to ask “why are you doing this to me?”  This is an excellent reminder for all of us, especially those who work with older people who are facing health challenges: have the conversation with your kids or other surrogate decision makers and make your wishes explicit!  It is also useful to note the ongoing need for what the medical document known as a DNR means –it doesn’t mean “no medical care” – it means do not resuscitate.

Between the short periods of time a doctor may spend (if any time is spent at all) explaining to an older person or one who has a medical condition or disease which would make a DNR, and the reluctance that most people have to talk to their loved ones about these difficult situation, these conversations are hard, but worth the effort according to all the people I’ve spoken to about it.  I always encourage my clients, and sometimes also participate in family meetings around this issue of facilitating a specific conversation about identifying a older adult’s wishes, talking about particular scenarios and using specifics where appropriate to illustrate how wishes might be carried out.

Daughter who decided, when asked by the doctor whether she would give permission to put her mother on ventilator decided that she would have done things differently and would have declined intubation.  Daughters could see the pain their mother went through and finally asked mother to respond by blinking to their question “do you want to be taken off the ventilator?”  Very powerful video I strongly recommend.  This is why I think it is important to take time with clients, who are willing and interested in getting real about the difficult end-of-life choice, to discuss with them and often with their adult children the difficult but inevitable prospect of “letting go.”

Along similar lines is an article by Sally Mauk in The Missoulian entitled “Doctor Says Advances Prolong Life, Make Dying Harder,”   The article pinpoints several of the difficult facts that we baby boomers must face in light of the experience of many of our parents’ deaths as well as medical and economic realities that have dramatically changed in recent years.  Mauk’s article is primarily about Dr. Ira Byock, a past president of the American Academy of Hospice and Palliative Medicine.  Byock’s website is www.dyingwell.org and his book Dying Well, published by Riverhead in 1997, is on my office bookshelf, and his newest book “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life,”  is a book I’ll be reading soon.  It is best to take the time to start thinking about these issues so that a conversation with loved ones will be more likely and probably less stressful – start with your doctor and don’t forget to consider how the medical and legal documents can work together to support your goals.