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