thoughts on end of life issues
(This is a somewhat sobering/depressing topic, but I really encourage you to read on.)
This is a topic that I'm somewhat of a militant on, in that I strongly encourage everyone I know to talk about it and discuss the issues around it. When I was seeing patients regularly, this was, sadly, one of the conversation topics I got the most satisfaction out of. It is truly disturbing how many health care providers do not talk honestly and frankly with their patients about this issues. Many physicians are not comfortable with death and are not able to help their patients prepare for and cope with it.
G and F's death has made me think about end of life issues in more detail recently and I had a few thoughts based on my professional experiences with patients as well as recent personal experiences.
You are never too young to start these discussions. It's an incredibly painful and difficult topic at times, but it's a hell of a lot easier to talk about it when you're not the middle of a health care crisis (this is even true for parents of young children and teenagers.)
1) Talk about it. Talk about what you want and don't want with your family and friends. And be specific. Nothing is more confusing to family members than when someone says 'I don't want any extraordinary measures,' but they have no idea what that really means to that person (and it means something different to each individual). If you don't know what you want, or under what circumstances various medical interventions should be offered or not, talk to your health care provider. If they won't talk to you about it in detail (and many won't. Amazingly enough, oncologists are the worst at this.), find another provider. There is a tremendous difference between being 30 and healthy and saying, I want everything done (where depending on the circumstances, you may have a decent chance of full recovery) and being 75 or 80 and saying I want everything done (where the odds of getting back to the level of independence you had prior to a major health event, are very low). A health care provider can help you understand what kinds of situations you might face and what your prognosis for recovery might be.
And here's the biggest reason to talk to your family about it. If it ever does get to the point where you cannot make decisions for yourself, and you have not told your family what you want, they have to deal with the guilt, anguish and pain in making the decision themselves instead of saying, 'well this is what she/he wanted.' Emotionally, it is much easier for people to carry out other people's wishes than to make the decisions for them.
2) Write it down!!! If do you have the conversations above, great; but people forget and misremember and sometimes just need reassurance. If you write it down (be as specific and clear as possible), you aren't relying on memory and if you spoke to some family members and not others, you decrease the risk of turning this into a major conflict. (Make sure that what you write meets the legal requirements of the state you live in. However, regarding the specific language in the document, remember that much of the suggested language out there was written by lawyers and not health care practitioners. Vague generalities don't help family and physicians really understand what your wishes are. Be specific!)
3) Designate a decision maker (and a back-up decision maker). This is especially important if you have a large or non-traditional family (same-sex or unmarried couples for example). If you have eight kids, do you really think they will all agree on what your wishes are? If you want to designate two or more people to be the decision maker, that is completely acceptable, but be sure to talk to all of them about what your wishes are.
4) Be an organ donor. Or if you are not physically able to donate organs, consider donating your body for research or medical education. (Most medical schools do give the ashes back to the families when the work is completed.) Your death, although tragic, can give life to several other people.
If you do decide you want to donate, be sure to put it in the above documents
(along with whatever exclusions you wish) and discuss it with friends and family.
5) Be organized. This is a big one I didn't even think of until after my friends deaths. Surviving family and friends may not know who you would want to be contacted or how to get in touch with them. Now that more and more of us keep our address books in password-protected electronic media, your family and friends might not be able to get to addresses, phone numbers and emails. Consider printing out a list of your contacts and keep it with you will/living will/health care proxy, etc.
6) How do you want to be remembered? Some people have very clear-cut ideas about what (if any) service they would want. Others don't care as much. In either case, write down your wishes. It will make decision making easier for your family and friends if they know what you wanted. If you don't care, say so.
There are many other issues and I could go on for pages on #1 in particular (the medical and emotional side of deciding what your wishes are), but this post is already long. I am happy to talk to anyone about this is more detail, but if you would like other resources as well, check out:
Information on the "Five Wishes" approach to figuring out your end of life desires
Elizabeth Kubler-Ross's website on grief with some useful links
An NPR series on end of life issues
An American Family Physician article on how physicians can help patients make end of life decision
A short useful article on end of life issues.
I hope that some of you have found this useful.
Love,
J
PS This blog is becoming quite random, isn't it?
posted by Disease Cowgirl @ 9:51 PM
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