Thirty years ago in the U.S., hospice was seen by many as immoral and even unethical. The idea of giving up did not exist in mainstream medicine. The technology of medicine was thought to be the greatest good. If something could be done to save a life, it absolutely should be done - in every case. I remember stories about people who would have died without artificial hearts - but once they had their mechanical hearts they were forever tethered to machines, in pain and pretty much miserable until they did finally die. That was an awful experiment, done for the right reasons, but oh my.
Of course there were - and still are - many who were kept alive for years on end, plugged in to ventilators, food tubes and other apparatus to keep the organs going, no matter what. A lot of time, money and energy has been invested in lawsuits and other forms of struggle over when to let go. It's a heartbreaking situation to have to face. No wonder we're confused.
The first time I heard the word "hospice" was well into the AIDS epidemic in the 80s. I remember when Maitri Hospice in San Francisco opened, and how grateful the families and friends of the poor men dying of AIDS were to have a place where their beloveds could pass away in peace and beauty.
It was a gift of that horrible era, the introduction of hospice into mainstream thinking. We learned that being kept alive by all means possible was not always the best choice and that indeed, sometimes these heroic efforts amounted to acts of cruelty - though of course no one ever intended to be cruel. Doctors were taught to save lives. It seemed black and white, but it's not so clear cut.
After that the idea of the Living Will and DNR orders came into mainstream thinking. At last people had a choice about end of life care.
A Living Will is a gift that everyone can give to their beloveds, some instructions about how each individual wishes to be treated in case of near death situations. Here is a link to the Mayo Clinic page about advanced directives. It's not a happy read, but definitely worthwhile. Check it out.
Even with a Living Will in place, I strongly encourage you to designate someone who shares your values around advanced directives as your medical power of attorney. This should be someone who lives in the same area, someone who can come to the hospital, have a look at you in intensive care, meet and talk to the doctors in charge. Every doctor interprets the idea of "heroic measures" differently. Every doctor has a different sense of when to resuscitate, when not to. These situations are not as obvious as it seems they should be.
Having someone clear headed and like minded on hand to make the call will be a blessing for you, your family and even the doctors in charge who will, more than likely, be sleep deprived, stretched thin and who probably know nothing about you. It's unfair to expect these frazzled individuals to know how best to proceed.
My medical power of attorney is a good, long-time friend whose values about advanced directives are aligned exactly with my own. Though my siblings would certainly make sound decisions about how to proceed in the event of a near death trauma, they are all at least 1,000 miles away from Washington. My medical power of attorney could be at any DC hospital within an hour. He not only shares my values around advanced directives, but he has a clear mind and great intuition. I trust him completely to know if and when to pull the plug.
My hope is that he never has to function in this role, but I'm glad someone can be on hand to help navigate the extraordinarily complex situations that arise all the time because modern medical science has outpaced ethics. Advanced directives are great, but in these situations, we need a human being to make the call.
Rather a grim topic, but important. Friday the 13th seemed like a good time to post these thoughts. Is that funny, or weird? Never mind.
May we be healthy, vital and happy. May we be well loved. May those who have to make these impossible decisions see clearly and compassionately. May it be so!
L'chaim. And Shalom.