Go Wish – Decisions about End-of-Life Choices in Alzheimer’s Disease

Finding it difficult to begin a conversation about end-of-life issues with your family living with dementia? Why would we even want to? Having discussions about wishes at the end of life make living well now less stressful. This game can make beginning the conversation less awkward.

No, not Go Fish.  Go Wish.  A card game about end-of-life preferences developed by Coda Alliance, a community-based, not-for-profit organization helping individuals and families prepare for end-of-life issue .  There is a movement afoot to begin having conversations about death.

Is it necessary to discuss end-of-life wishes with family living with Alzheimer’s disease or dementia?

It is a good idea. And for good reason.   We need to make our choices known or the default – aggressive medical care- will be the decision.  Death has been a taboo subject but that is changing.  Movements such as 5 Wishes, Compassion and Choices, and the Conversation Project move discussions forward to understand and deliberate advance directives and articulate choices and wishes for the end of life.  Unfortunately, it seems the movement is slow.  I had a meeting with 10 individuals, all identified as leaders in aging;  only 2 of us had documented our end-of-life choices and carried on conversations with our families about our wishes.

Articulating end-of-life wishes is possibly the last thing you want to do after a diagnosis of mild cognitive impairment, dementia, Alzheimer’s disease or cognitive decline – this is what I’m told by many patients. “I’m dealing with so much and don’t want to consider what lies ahead”.

But we know ultimately what lies ahead…..death is inevitable.  But how you want to die is a choice.  What matters to you?  Where do your priorities lie?

Once you’ve had the conversation, document your wishes in a dementia-specific advance directive to share with your physician.  The Dementia Directive Form provides scenarios specific to early, mid-, and late stage dementia to capture your preferences.

Go Wish can ease beginning the discussion about end-of-life choices

Go Wish is a practical game that has you rank 36 priorities about life and death (e.g. to have family with me; talk about things that scare me; help others; to not be a burden to my family;  to remember personal accomplishments).  The game asks that family predict what you might want –the similarities and differences will spark conversation.

And, down the road,  if or when you’ve decided on comfort, healing, and a natural death as the only way forward, we will discuss the  MedicAlert “Do Not Resuscitate” bracelet and/or the Physician Orders for Life-Sustaining Treatment (POLST)– a medical order to avoid unwanted medical interventions allowing paramedics/emergency medical technicians to honor your preordained wishes in an emergency.

Consider this

  • Two-thirds of American adults haven’t completed an advance directive. It’s a legal document outlining a person’s wishes if they become unable to make their own health care decisions, particularly near the end of life. Make a commitment to record your wishes!
  • One-quarter of American adults over age forty-five are unwilling to discuss their parent’s death with their parents, even if prognosis is less than 6 months.  Be brave – have the conversation!
  • Half of all Americans said they were counting on friends and family members to carry out their wishes about how they wanted to die, yet seventy-five percent of them never spelled out those wishes to anyone. Try making the important conversation a game – don’t leave it to chance.
  • Finally, for tips on how to help you as the helper, sign up here.

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