End-of-Life tools 25.02.15

Two of my favourite authors in the healthcare sphere are Drs. Atul Gawande and Abraham Verghese. Not only for their valuable insight into the profession of medicine, but also for the very human – and markedly different – approaches which they take to their topics. This blog isn’t meant to be a book review site, but when a book touches me I’m likely to want to write about it. This is one of those books!

You’ve no doubt heard by now of Dr. Gawande’s latest book, published late last year; Being Mortal: Illness, Medicine and What Matters in the End. It’s largely a call to action – not only for those of us working in healthcare or medicine, but across society. A call, a heartfelt plea, to improve caring at the end of life. An appeal to change how we, particularly here in North America, approach end of life.

The catalyst for this post was a friend’s challenge to me; to create a one-line slogan for this book. The best I could come up with was: ‘Let’s de-medicalize dying’. This sentiment arises fairly soon in Being Mortal, on page 6: “Modern scientific capability has profoundly altered the course of human life. People live longer and better than at any other time in history.

But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have been alarmingly unprepared for it.”(1)

Then towards the end of the book, on page 245, was another statement that deeply resonated with me – with my belief in patients’ rights at end of life:

Certainly, suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary.
Given the opportunity, I would support laws to provide these kinds of prescriptions to people. About half don’t even use their prescriptions. They are reassured just to know they have this control if they need it.”(1)

If you haven’t yet read Being Mortal, you really should. If not for your patients, then for your own family and loved ones. Only then will you understand how Dr. Gawande arrives at a set of questions which he suggests be asked of anyone who’s facing an end of life situation.

a woman's hand on a hospital bed, hooked up to monitors and and medication port
©Sandra Woods

Whether someone is contemplating a surgery, an illness, or even advancing age, he suggests that find out – from that specific individual with specific beliefs and values – what’s important to them at end of life.

“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive… Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same:

  • What is your understanding of the situation and its potential outcomes?
  • What are your fears and what are your hopes?
  • What are the trade-offs you are willing to make and not willing to make?
  • And what is the course of action that best serves this understanding?”(1)

If you’d like additional tools to broach these types of questions, there’s a group in the United States that has been encouraging people to speak with their loved ones about end of life planning since 2010. It’s aptly named The Conversation Project (2).

Their website, launched 2 or 3 years ago, provides some free downloadable (i.e. printable) workbook-type documents, which are a fantastic starting point for this type of end of life conversation. [See the link, at bottom of this post.]

The free tools from The Conversation Project are meant to help families have these types of discussions amongst themselves, while still in good health. To give individuals time to consider what’s truly important to them; what they would value if they were to become ill or incapacitated.

I’ve read these documents from a bioethics perspective, and am quite comfortable recommending those available today (barring any major revisions or shifts in their stand on end of life conversations, of course). At present their materials are non-denominational, fairly easy to read, and approachable.

References

(1) Gawande, Atul. Being Mortal: Illness, Medicine and What Matters in the End. 07 Oct 2014. Doubleday Canada.

(2) https://theconversationproject.org