Create peace and dignity at the end of life

Never heard of the 90-80 dilemma? That’s because I have just coined the phrase. You see, tied into soaring healthcare costs in this country, is another humanitarian crisis of massive proportions.

A huge gap exists between what Americans want for end-of-life care and what they actually receive. 90% of people wish to die at home, yet nearly 80% of us actually die in institutions (hospitals and nursing homes.)

So, how did we end up here? How have we tolerated such an extreme disconnect between our desires and our reality? Such a profound disconnect is fundamentally un-American.

But let me tell you a secret. The 90-80 dilemma was actually created by us.

This crisis was unintentionally created by our modern beliefs and practices regarding death and dying. Listed below are what I believe to be the 4 core beliefs and practices that have led to this dilemma:

  1. Death has become a “medical event” that must be treated in a medical facility.
  2. We have become hopeful that high technology can “cure” us of death or at least delay it for a later or more appropriate time.
  3. We don’t talk about death socially, so therefore, no one plans for it (ex: living wills, powers of attorney, etc).
  4. We have lost deep connectedness and intimacy with others in the modern world. This translates into a scramble to keep the actively dying alive at all costs in efforts to gain time for creating closure and saying the things which need to be said.

These four issues have created this very real social crisis and they contribute to the strain that exists within the Medicare and Medicaid systems.

So, now I ask you: How do we solve the 90-80 dilemma? How do we find a way to allow those who desire it, to pass away in the peace and comfort of their own homes, surrounded by those who love them most; instead of dying alone, in an ICU, in the middle of the night, or in a nursing home.

Here are my 4 recommendations to solve the 90-80 dilemma:

  1. Take a natural view of death. Understand that death is a natural event that can usually be comfortably and peacefully managed at home or in a pleasant hospice setting.
  2. Understand that the most appropriate use of medical technology at the end of life is the aggressive treatment of pain or any uncomfortable symptoms, and not the selection of medical technology that artificially prolongs the dying process such as ventilators, ICU admissions, and CPR. We must effectively move from “high tech” to “high touch” medicine at the end of life.
  3. The above items may be accomplished if we are able to re-introduce death and dying into public conversations. Why should we be afraid to talk about one of the most fundamental facts of life…that it ends? Further, people who can openly discuss death are more likely to make advanced plans, easing the decision-making burden on family and loved ones when “their time” comes.
  4. Finally, we must discover the power and gifts inherent in the end-of-life period. In the face of the sure knowledge of coming death, an emotional window of opportunity opens—love may be freely expressed, old grudges may fall away in insignificance, and closure may be obtained that remained elusive at other times of life. We must focus on creating quality of time at the end of life so that these gifts may be enjoyed.

All of us, together, can choose a different way. We can solve the 90-80 dilemma and create peace and dignity at the end of life. By consciously changing our beliefs and practices regarding death and dying, you may take your last breath in your own bed, held in the arms of those who love you most … as you (and 90% of Americans) wish.

Monica Williams-Murphy is an emergency physician and author of It’s OK to Die.

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  • karen3

    Missing key items. One, sick people require care that is often beyond the ability of family to provide.  Address this.  If you have ever tried to arrange hospice for a loved one and actually have the services provided?

    Number two. I can’t tell you how upsetting and intrusive it is, when a loved one is dying, to get endless lectures from supercillious medical providers about how “YOU HAVE TO LET GO NOW” in front of the dying person to the point that one does not have a moment to be with one’s loved one. It comes off as a bunks of vulturous jerks who just can wait for a bed to be cleared.  Long lectures about can;t you pull the plug more quickly, etc etc.  It is horrifically insensitive as it is 100% clear that the concern is not with the patient as with getting the bed free for someone more profitable.

    • http://twitter.com/Oktodie OK to Die

      Karen

  • http://twitter.com/SueWintz Sue Wintz

    I agree with your assessment of the 90-80 dilemma and the steps you outline to help address this crisis.  I also hear the pain from Karen regarding her experience, which is unfortunately not at all unique within our current health care system.  As a board certified professional chaplain affiliated with HealthCare Chaplaincy, I advocate that the very first step when a patient enters into an ED, ICU, or other health care organization that that the team gets to know the patient and their family.  While physicians, nurses, respiratory and other therapists are doing what they need to do to assess and stablize the family, chaplains are the members of the team who have the conversation with families to hear their and the patient’s story and identify what is most important to them.  This facilitates the important whole-person care that is not only hoped-for by families facing a medical crisis, but should be the norm.

    Chaplains are can also be the advocate for families, such as Karen’s, who know that they need to make choices about treatment options but feel overwhelmed, fatigued, angry, and confused by medical language – all  of which are absolutely normal.  As a chaplain, physicians know that I will not allow such conversations to take place at the bedside unless that is the family’s choice.  Rather, the family is provided space in a conference room to meet with the team to receive information, ask questions, and discuss their beliefs and values.

    Modern health care has many challenges.  It is my hope that physicians and all health care providers will be support in their efforts to work collaboratively with families to truly create peace and dignity at the end of life, not only for the patient but for their families.

    Professional chaplains can be the experts in ensuring this happens.  Physicians:  make it clear to your employing organization that clinically trained, board certified chaplains are on staff.  Work with them on your team.  Families:  when you are in the hospital, ask for the chaplain if one hasn’t already been consulted.  We’re not there to preach or impose a belief system; we are there to support you in yours whatever it may or may not include.

  • http://www.facebook.com/people/George-Hossfeld/758254866 George Hossfeld

    I think a 5th cause, related, is that 1950 was the first year that more people were born in the hospital than at home.  Deaths were similarly institutionalized.  So, events that used to be part of life, became distant and therefore very frightening.  The average person today in the US has neither seen birth, nor death.

  • petromccrum

    The biggest issue in this situation is the total lack of information provided by health care proffessionals.
    If they would just be open and honest and say” You are terminal; we can provide no more treatment options” patients and family members would be able to make whatever end of life decisions they choose.
    Without this information the patient is just swept along with what medical personnel think is best.
    DO NOT blame the patients for this situation. Lack of truthful, honest, open communications by health care providers is the problem. Agree with Karen,  My personal situation with my husband was very similar.
    I was talked out of hospice by hospital personnel.  Awful, Awful,

  • http://www.facebook.com/people/Marguerite-Horn/785813760 Marguerite Horn

    The fear of death and dying is a big stumbling block for many of us in this society, including professional caregivers. Many leave their loved ones in hospitals to die receiving unnecessary medical procedures and amongst strangers because they cannot cope with the emotions, costs and caregiving involved in keeping them at home. What a pity to miss this, often, gentle journey with their loved ones in their final good bye.. 

  • http://profile.yahoo.com/BRDB4JQJCWCARQUXHEBJBSGNSE arnold

    Good piece with good advice. There are two things no physician can do. These are to make someone young again, and to cure the incurable. Once people realize that technology does not prevent death, it only prolongs it, will people turn from technology and become more humane, and allow the laxt normal act of lofe to occur, in its natural form, with love, honor, and respect. The reality of life is not the heroics and unrealism of the TV world.

    • http://twitter.com/Erin_Tolbert Erin Kadeg Tolbert

      Agreed.  I see so many patients whose lives are simply being prolonged but they are not “living”.  I think physicians and other medical providers need to have difficult conversations with their patients and their families who have chronic medical problems describing end of life options so they know what to expect and can weigh their options. 

  • http://profile.yahoo.com/KNZ22VMISM6D26MXSJ4PKMGXXM James

    A problem I see with the 90-80 rule is what it takes today for a chronically ill person to die at home. I am a hospice medical director and I can tell you that no hospice can provide 24 hour skilled care for days-weeks-months of the dying process, This means families who are ill equipped at best and 3,000 miles away or estranged at worst, must help or pay more than they can afford. We have successfully done away with sudden death and 80% of us can look forward to slowly declining over months to years requiring more and more personal care.  Long term care insurance is expensive and fails to cover the needed services in most cases. As you can see these are questions not answers. My brother and sister-in-law plan to take up extreme sports when they get to the dependent phase hoping to spare themselves the indignity of frailty and their children the expense.