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Advance Care Planning Part 2: Conversation starters

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Refusal_of_treatment_formMy last two posts about advance care planning  and palliative care  have struck some nerves.  I’ve heard from people who have successfully had these conversations and, more frequently, from people who don’t know how to begin.  So, this week I thought I’d share some thoughts about starting the discussion with your loved ones.

You start.  Many (dare I say most?) of us are worried about the end of life preferences for aging parents.  It can be tough to start the conversation if your parents don’t take the initiative.  So do the work yourself first and use your wishes to start the conversation.

It’s not a one shot deal.  This is a process, not a single conversation.  And it’s difficult.  Start before it’s needed and take it slowly.  Present the idea, share your plan, circle back around and try again.  Most of these conversations start in response to a life threatening event, but all too often that’s too late.

Know your audience.  Some people may be most comfortable with a one-on-one conversation. Others may want a family meeting.  For some that may mean just family, for others close friends or health care providers should be involved.  If you’re not sure who your loved one wants involved, ask!

Find a way in. The death of a friend or a relevant piece in the news might be a good way to start the conversation.  Ask their thoughts and see if it leads to a deeper conversation.

Agree to disagree.  Remember that you’re trying to learn about their preferences, not convince them to see things your way.  It’s okay to disagree. Ask questions and try to learn why they think the way they think. And share your thoughts and wishes honestly.

In Atul Gawande’s book Being Mortal he tells the story of a man who said, on the eve of a risky surgery, that he would be okay with being paralyzed if he could eat ice cream and watch sports on television. This was completely unexpected to his daughter. When the surgery didn’t go as expected and she had to make a decision on her father’s behalf, she knew what he would decide because she had the conversation with him. And, most importantly, it was different than the decision she might have made otherwise.

Work backwards.  It’s hard to think about end of life wishes in the abstract.  Once the conversation is underway, work backwards from the types of issues that might reasonably arise and what decisions would need to be made in each. Begin the Conversation has a nice advance care planning workbook that includes a variety of scenarios to get you going. The National Institute on Aging has good resources about this as well.

I’m sorry. There’s no way to make this easy. But it’s worth it.

Most people say they don’t want to be a burden to their family with difficult decisions at the end of their life and yet most haven’t done any advance care planning.

Most family disputes around elder care or end of life issues that end up in court could be avoided if wishes were clearly documented in advance.

Most people say it’s important to put their wishes in writing, but very few actually have.

Do you have other suggestions for having this conversation?  Or stories about experiences where an advance care plan made a big difference?  Please share.

Advance care planning

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A version of this post first appeared at https://www.seniorly.com/.

tracksLast week I wrote about understanding individuals’ wishes as a means of providing culturally sensitive palliative care.  That assumes the individual in question knows their wishes and can communicate them or has someone who can communicate for them.

Advance care planning is one way to increase the odds that your wishes will be honored.

Be forewarned – there are forms involved.  They can make it looks as simple as checking some boxes, finding a witness or two, and signing your name.

In reality, of course, there is a lot of thinking and some difficult conversations that need to happen first.  You are, after all, giving someone the legal ability to make medical decisions for you if you aren’t able to.  That could be anything from releasing medical records to removing life-sustaining treatments.

It’s daunting and when you’re in reasonably good health, it’s tempting to put it off.  In fact, most of us do.  Only a small proportion of people have some sort of documentation about their care preferences with the numbers, not surprisingly, increasing dramatically among people who are clearly facing the end of life.

And yet, there is research evidence that patients with some form of advance directive are more likely to have the care they want at the end of life.  Even more compelling, those with specific, clear documentation of their wishes have a better quality of life in the week before they die than those who don’t.

The documents – advance directives, living wills, durable power of attorney, do-not-resuscitate order, Physician Orders for Life-Sustaining Treatment – are all just mechanisms for communicating your wishes.  Advance Care Planning  is the process to get you there.  It’s how you learn about what types of decisions might be needed, figure out what you want in relation to those decisions, and share them with your family and health care providers.  It’s how you figure out and share your values and wishes related to end-of-life-care.

This isn’t easy and it’s not something you do once and never look at again.  Your wishes are likely to change over time and may be different as your circumstances change.  You’ll need to revisit the process and update the documentation. There are lots of resources out there to help you get started. The National Institute on Aging is a good place to start.

Have you done advance care planning?  I’d love to hear about your experiences.

Four Little Questions

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  1. What is your understanding of the situation and its potential outcomes?
  2. What are your fears and what are your hopes?
  3. What are the trade-offs you are willing to make and not willing to make?
  4. What is the course of action that best serves this understanding?

Could these four little questions – that appear and reappear throughout Atul Gawande’s book Being Mortal: Medicine and What Matters in the End – reshape end-of-life care as we know it? Surely not on their own, but the stories woven throughout Gawande’s discussion of the current state of medical care make a compelling case. These four little questions, after all, are not really so little.

We as a society are uncomfortable with death. That may seems like a silly statement to make. After all, do we want to really be comfy with the end of life? Well, perhaps not. But, the fact is it will happen to us all and our discomfort has made death a taboo topic of conversation. We don’t even like to say that someone died and instead say things like “he passed on” or “she is no longer with us”. Consequently, we shy away from talking about death even at those moments when it is most crucial. The amazing advances in medicine that can extend life, even beyond the point of truly living, allow us to avoid facing the reality of death and to become obsessed with longevity over quality.

Hence the four not-so-little questions.

I appreciated Gawande’s honest depiction of his own struggle as a surgeon confronting death with his patients (as well as friends and family) and his efforts to look for a better way. His concerns lead him to experts in geriatric medicine and palliative care, medical specialties that don’t just focus on treating medical conditions, but on improving quality of life. Ironically, their approaches often improve underlying medical conditions as well, at least for a time.

It was a palliative care specialist that told Gawande the four questions. Using the answers to these questions to guide treatment – even when the patient is not able to speak for themselves – gives them a measure of autonomy and control in the midst of limited choices. Asking these questions slows the process down and helps the doctor see the human being, not just the illness. It shapes the discussion in a way that is more meaningful to the patient and their family than a bewildering recitation of medical facts and treatment options. It puts these options in a patient-centered, person-centered context.

The results can be surprising. One story that stood out for me was the man who said, on the eve of a risky surgery, that he would be okay with being paralyzed if he could eat ice cream and watch sports on television – much to the surprise of his daughter. When the surgery didn’t go as expected and she had to make a decision on her father’s behalf, she knew what he would decide because she had the conversation with him. And, most importantly, it was different than the decision she might have made otherwise. It wasn’t an easy conversation, and she is a palliative care doctor who does this for a living. Imagine how difficult for the rest of us (doctors and family alike) who don’t even know what questions to ask.

I suspect that most of us give our doctors the benefit of the doubt. Even when I’m unhappy with the care I or someone I care about receives, I assume that they want what’s best for their patients. But their training is to fix problems, their orientation is to extend life, and the systems they work within are generally not set up to facilitate anything else.  These things need to change.  Sometimes (as with the very old), there is not a clear problem to fix.  Sometimes (as with the terminally ill) it is not fixable.  Being Mortal highlights for me once again the importance of interdisciplinary teams. (Cue plug for social workers here).

Social work training is rooted in person-centered, holistic care. While doctors should not be left completely off the hook and allowed to push these hard discussions off on social workers or others, having a social worker as part of the conversation with patients would help doctors manage the emotional and relational parts of these important conversations and decision making.