Palliative Care

I'm not entirely sure how "read a book about palliative care" got on my bucket list tracker, but it seemed timely as my last Grandma transitions to hospice care.  I read The Conversation.  You can save yourself time by watching the video theconversationbook.org instead.

The gist of the book is that our medical complex is predisposed to take any and all actions that could prolong life.  Many of us will face terminal illnesses where these invasive, uncomfortable measures may substantially decrease the quality of our lives for marginal gains on the quantity of life.  He thinks that more frank conversations with individuals about what they want their end of life care to look like could smooth some of the grief and anxiety of this phase.  He encourages people to document their wishes and share these with loved ones who may ultimately be responsible for making those care decisions, stating that without those conversations, loved ones are only doing slightly better than chance (i.e. 60-something percent) at guessing which option the recipient would have chosen.

Cool.  For posterity, I [Belle] can go first...  (the rest of this is pretty bleak, so feel free to skip if you're looking for more light-hearted fare)

Hopefully when the time comes to make these decisions, this blog post is deeply buried in the archives and forgotten.  Incidentally, if the course of treatment I got was inconsistent with this, don't beat yourself up about it.  Maybe I changed my mind and at a minimum, I should have let you know this post existed before putting you in such a crappy situation.  MacGyver would probably be making these decisions for me unless for some reason he is unavailable.  Hopefully he'd keep any surviving parents, siblings, and extended family in the loop though.

What things are most important to you?  What makes you happy?
I'm happy when I feel like I am useful and helping people.  I don't want to get to a point where people who care for me feel I am a burden or where I can't recognize and connect with people who have been a non-trivial part of my life.  My favorite activities currently are reading, training for triathlons with the tri club, learning to garden with the master gardeners, and adding/checking off things on my bucket list... I reserve the right to change those later.

What fears do you have about getting sick or needing medical care?
Main fears-- pain/symptoms that are unmanageable, becoming a time/financial inconvenience to people who care for me, loss of independence and autonomy and the dignity that comes with it.  I'm afraid that if I have a terminal illness that I know will eventually completely incapacitate me, I won't be allowed to take advantage of programs like death with dignity to time the end of things on my own terms.

If you were very sick, are there any specific medical treatments that might be too much for you?
I think life-prolonging procedures should be saved for candidates that have a good chance of recovering and resuming a high quality of life as an outpatient.  I don't want procedures like feeding tubes and breathing support if the odds are good that I would need to stay on them for the rest of my life.  I don't want heroics that have only the slimmest chance of improving things.

Do you have any beliefs that guide you when you make medical decisions?
I want to leave the world in a better state than I found it.  I believe it takes fewer resources to make someone comfortable and manage their symptoms (increase their quality of life) than it does to increase their quantity of life.

I think we should do what we can to understand the most likely health problems we will encounter and make lifestyle choices to mitigate these to the best of our ability.  When health conditions arise, I would prefer to manage them through lifestyle modifications rather than medical procedures or prescription medicines whenever possible.  As much as I love statistics and evidence-based medicine, I'm open-minded about the efficacy of holistic medicine.  I believe some of it may not be substantiated in clinical trials because it is not something that could be patented and profited from.

I think there is a lot of guilt that comes with the trend of family diaspora.  My closest relative is 400 miles away.  My parents are 2K miles away.  I wouldn't want anyone to feel obliged to move to/stay in OC for my benefit.  I am OK with moving closer to a caregiver if it is convenient.  My ideal "elderly" situation would be to design and build a tiny house on a trailer bed and set up camp on an amenable caregiver's property so I could be independent but have opportunities to help out and be monitored and helped myself if necessary.  MacGyver doesn't like confined spaces, so if he's still in the picture, let's defer to whatever arrangement makes him comfortable.

When I die, I'd prefer to be cremated rather than buried under a lawn someone needs to constantly mow, making loved ones feel guilty for not visiting me more often.  I never cared for lawns.  I have a bucket list item to get turned into a diamond (i.e. lifegem), so if anyone wants to help me out with checking that off the list, awesome.  If I don't have enough savings to do it though, don't worry about it.  No need to author a grandiose obituary for me.  No need to guilt people into making epic journeys cross country to attend my funeral.  If anything, I think it would be cool to arrange a day of service and enable folks to do a little bit of volunteer work in my memory instead.