Have You Had the Conversation Yet?

Shadow Selfie

Shadow Selfie

Yesterday morning I attended an informative program put on by the Colorado Guardianship Alliance (of which I am a member) which featured palliative care specialist Dr. Hillary Lum, speaking on Advance Care Planning, Palliative Care and Hospice.  I recently posted a short blog which featured an interactive meeting put on by the Life Quality Institute which featured The Conversation Project.  I returned from the meeting with a helpful booklet that is loaded with end-of-life facts and which can be used to facilitate the conversation which most of us say is really important to have (about end-of-life wishes) but that the majority of us have not yet had with a loved one.  I met with new clients this afternoon and was able to give one of the booklets to them, so I will be able to hear how it may help them have the conversation and communicate wishes with their adult children.  I’ll keep you posted.

By the time you get to be “a certain age” (okay, I’m celebrating a 50-something birthday next week, so please pardon attention), you have most likely had some experience with a chronic or terminal illness of a loved one or a death of a family member that did not die a good death.  Yes, I said good death.  Death is part of life, is contained within life and so I think if we can talk about quality of life we can also talk about quality of death.

Palliative care and hospice care focus on the still much misunderstood concept of quality of life medical care.  Remember the “death panels?!”  I don’t know where people come up with this stuff, but there are folks who think they exist . . .  maybe we’ve watched too many B movies of the sci-fi genre! Here’s a great post by a palliative care doc about those nonexistent faceless federal bureaucrats.  Dr. Lum (getting back to my original topic now) spoke succinctly about the distinctions between palliative care and hospice care.  She shared a great resource called “fast facts” – you can google eperc fast facts and get the Medical College of Wisconsin’s really informative website.  Fast Facts and Concepts provides concise, practical, peer-reviewed, and evidence-based summaries on key topics important to clinicians and trainees caring for patients facing life-limiting illnesses.  It has straightforward descriptions and answers a lot of questions you may not have known to ask about palliative and hospice care and the medical issues attendant to things you might ask your doctor about.

So while I’m on the topic of resources relating to advance planning, the ABA just published its August issue of Bifocal which features as its lead article “Advance Care Planning in a Nutshell.”  Sabatino focuses on the two most basic question we need to tackle early on in the process: (1) Who do you select as a capable, competent and conscientious health care agent (a/k/a surrogate decision-maker); and (2) What kind of information and guidance can I provide to that person and perhaps other loved ones about what I want and what I don’t want in this context.  For some of us, these questions are not so difficult, we may think “my kids already know what I want” or “my spouse is a good mind reader” – but then there is the rest of us!  We may think it’s not good enough to be general and not so detailed about our wishes, that this kind of conversation or documentation requires a fine-tooth comb.  Not so!  While it’s true I recently purchased a crystal ball, I have yet to perfect my skills at predicting the manner and circumstances of a client’s death (hey, wasn’t that an X-Files episode, back a few years?).

One of the reasons that lots of details about end-of-life wishes aren’t really helpful or required – even if we have a chronic illness that limits our life, is that we cannot know all the details around how we would want another to choose in the event we were unable to choose or couldn’t communicate.  Hence, the focus on values and priorities, to let the big picture of what is important to you guide the conversation – and not let it get bogged down in details that will probably never apply.  I think you’re getting my drift now, that it’s a good idea to inform your health care agent about those three aspects of making informed health care decisions: consider the risk, the burden along with the benefit – and how they play out in the context of your values about health care.

I will close with this – while our culture and the American medical-industrial complex has a ways to travel in terms of getting more folks educated about quality of life focused care at the end of life, the Project on Death in America is helping make serious headway in getting better attunement toward compassionate care for the dying.

 ©Barbara Cashman 2014   www.DenverElderLaw.org

 

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.