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End of life choices.

October 10, 2012

Here in the US, people tend to be quite insulated from the realities of the end of life.  Our deaths are the inevitable conclusion of our life as we know it, but few people have actually been with someone when they died or cared for a loved one around the clock in those last days.  Both birth and death have become something relegated to hospitals, removing them from our day to day experience.

The enormous strides we’ve made in development of vaccines and antibiotics have greatly reduced the number of children suffering the “childhood diseases” and dying from them.  Advances in medicine lead to much more high tech intervention in a hospital setting when someone is dying.  In general, people don’t want to die and don’t want their loved ones to die.  This makes it easier to turn away from this integral part of our lives.  Thus many do not consider what they would want done (or not done) when their time comes.

Many people assume that death is the worst possible outcome in any situation.  From my point of view this is not true.  I have observed the suffering that can happen when the last days or hours or moments of life are spent enduring treatments meant to prolong life.  In cases where a person has a reasonable hope of being able to live a life that is meaningful to them if they survive, this may be worthwhile.  However, when there is no reasonable expectation of survival or meaningful survival, is it right to do this to people?  I’ve seen families bring their ailing 90-something year old grandmother in and insist on doing “everything possible”, not to make grandmother comfortable, but to extend her life.  In reality what they are doing is extending her death.  I always wondered what these people thought death would look like.  Why is it so surprising when an elderly person succumbs to the infirmities of extreme age?

Compassion and Choices is an organization that assists people with making decisions about the care they want at the end of life.  On an episode of the NPR show Fresh Air, Terry Gross interviews Judith Schwarz, a counselor who works with dying patients and their families.  This interview explores some aspects of this issue.  I’m glad that organizations like this exist, because many (or perhaps most) people do not realize the choices available to them.  I’ve talked to people who took their dying mother to the hospital even though they would have preferred to keep her comfortable at home because they thought that was what they were obligated to do.  If only more people were aware of their right to choose less invasive treatment in cases like this.

When it was proposed that Medicare reimburse doctors for counseling patients about advanced directives and choices in end of life care, the right wing extremists, led by Sarah Palin, began scaring people by calling this proposal “death panels.”  PolitiFact awarded this claim the Lie of the Year Award for 2009.  It is a real pity unscrupulous people used this provision of the Affordable Care Act to scare people into supporting their political goals.  As a result, even a less comprehensive reimbursement plan was rescinded shortly after taking effect at the beginning of 2011.  See a discussion of this and the effects it has had on patients in the American Medical News.

The real truth is, we do have choices.  If what you want is to be in a hospital getting every available treatment, that is your right.  If you prefer to stay at home and receive care to make you comfortable, that is also your right.  We do not always get enough warning to plan our deaths, but in many cases we do.  If you are interested in preparing an advance directive for health care, the Caring Connections website provides printable versions of each state’s version of this document.  In the event of a known terminal illness or condition, hospice care is available to ease the last months and offer support to the dying person and his or her loved ones.  For more information, see the National Hospice and Palliative Care Organization’s website.

Nobody really wants to die, but when the body has stopped functioning in a way that allows one to enjoy living, many welcome death.  I hope that when my time comes, I am kept comfortable and allowed to make what choices I can.

One Comment leave one →
  1. October 11, 2012 10:12 am

    I’m reminded of some words by Elizabeth Kubler Ross in one of her last books. She said, “Let me live before I die”. I agree.

    Having worked for nearly 35 years as an end of life and Hospice RN, I’ve witnessed deaths too numerous to count. There were people who died struggling, trying intently to hang on to life. There were those who gracefully entered dying and leaned into death with ease. Most chose to have medicine to deal with their pain, but some did not.

    The point is, that all of these people in hospice care made choices regarding their deaths, some well ahead of the time of their deaths, just as some folks improvised. All were given choices that, by and large, improved their quality of life. We on the Hospice team helped the dying optimize what life they had left. When it was time to die, we held them in comfort and supported them until they died. We stuck around to help their families and dear ones through the grieving process. We participated in memorializing and honoring them in death.

    Over the years, many elderly folks have told me about “the olden days” when their mothers and grandmothers and aunties took care of their own dying family members, neighbors and friends. I see this movement starting to make a come back in my own community and in many others as people loose the financial ability to check into the hospital when they get close to death. More people are just dying of old age at home than were even 15 or 20 years ago.

    II believe this is a step in the right direction. Our medical system is getting mighty crowded. Many people would much more like to die in a quiet and comfortable setting than in a crowded and noisy cardiac floor or in the hallway of an emergency room or in an ambulance.

    When it comes down to it, we don’t really have 100% certainty of dying where we want to, under the circumstances we’ve planned for, but it certainly doesn’t hurt to make some advance plans. We can plan not to have invasive medical care under certain circumstances of our choosing. That’s a good start! To let our families and lawyers and doctors know our wishes is perhaps the simplest and easiest way to let our wishes be known. That won’t prevent us dying in traffic, or of a sudden heart attack, but at least we have covered our bases.

    When I die, I hope it will be in a comfortable place, surrounded by my loving family and friends, there to support me as I take off on my next adventure. May I be free of pain, able to say my goodbyes and last messages. Let me be at peace as I take my leave.
    That’s all I ask.

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