November 3, 2011

The Best Way to Die

"SHE LIVED -- AND DIED -- JUST THE WAY SHE WANTED"

The more I read, the longer I live, the more I understand how important it is to prepare for death.

Thanks to the conversations I've had -- first and most importantly with myself and then with my kids and doctors,  I’m as ready  as I can be (the unexpected, however, seems to happen more often than the expected) as are the people I love. My primary doctors have a good sense of  the choices about care that I'd prefer. If you've visited this blog before, you've probably heard me say that it’s the QUALITY -- not length -- of life that matters to me. I've said that so often, my kids no doubt say to themselves "There he goes again."

Many, understandably are reluctant to initiate conversations on death and dying.. They’re difficult discussions, and we’re probably more worried about making our families uncomfortable than we are about our own discomfort with the topic. But NOT having those talks – with our families and with our doctors – can end up causing infinitely more distress for the people we love and needless uncertainty among our caregivers.

And, for me, there's another concern. I worry that we're spending way too much of our limited national resources on care for seniors (and here I'm talking only about seniors like me, who could easily carry more of the financial burden). And end-of-life care is where the megabucks are spent. I don't want either my family or the government spending money on pointless medical care. And my kids are very aware of my strong feelings about this.

In a thought-provoking article published in The Washington Post on October 17, infectious disease specialist Manoj Jain cited a variety of statistics:
  • 40% of all people experience long, lingering deaths (like frailty, dementia)
  • 20% die after a sharp decline (like metastatic cancer)
  • 20% die after shifting ups and down (like heart or lung failure)
  • A small percentage will die from sudden accidents.
Jain also wrote that 80% of people want to die at home, but most of us will die in hospitals, often undergoing useless surgery in the last weeks of our lives.

Think of it: the needless pain and suffering, the disregard for our own true wishes (often undocumented and unknown), the agony for families, the unbearable cost. Isn’t there something just fundamentally wrong with this picture? Will we permit it to be the snapshot of our own last days on earth?

But NOT if programs like Gundersen Lutheran Hospital’s “Respecting Choices” catches on. That plan, with its careful consideration of all end-of-life issues, is the key reason NPR titled its November, 2009 feature about Gundersen: “Why This Wisconsin City is the Best Place to Die.”

Here’s a scenario described in that piece:
"Wiedman takes out a 12-page document and goes through the questions: Who do you want to make health care decisions for you if you can't make your own? If you reach a point where it is reasonably certain you will not recover your ability to interact meaningfully with friends and family, do you want tube feedings, IV hydration, a respirator, CPR and antibiotics?
These are complicated questions. It's something that the Colberts — like most adults in this country — have put off. But after Sandra's scare today, and Jim's hospitalization with a head injury this summer after he fell off an excercize bicycle, it's something they both know they need to do.
Sandra cries when she writes down that she wants each of her grandkids to speak at her funeral. But there's more laughter than tears. Sandra says she wants Pink Floyd's "Put Another Brick in the Wall" and Ricky Martin's "Livin' la Vida Loca" played at her funeral. Jim jokes that he'll write down in his advance directive which of his daughters really was his favorite — a family joke among the girls.
The Colberts complete the directives and the nurse summons witnesses to watch them sign. Then Wiedman enters them in the health system's computers.
Now, anytime a doctor in this large health system pulls up their records, their wishes for end-of-life care will be prominently displayed.
The result of all this attention is that nearly all adults who die in La Crosse, 96 percent of them, die with a completed advance directive. That's by far the highest rate in the country."
Don’t we want this peace of mind for ourselves and our families, too?  Isn’t it the perfect legacy for us: that we took responsibility for our own lives… and our deaths, too?

Death: the Word Carries Such Heavy Baggage in our Culture
A September 28, 2011 article in the online report HealthDay reviewed a study that suggests sick people who discuss end-of-life care do not die earlier than their counterparts who don’t have advance directives in place.

Study author Dr. Stacy M. Fischer, assistant professor at the University of Colorado School of Medicine, initiated the study after the 2009 health care debate, when the issue of Medicare funding for advance directive discussions came under intense scrutiny. It was at this time that – here I cringe – the phrase “death panels” became part of the national lexicon.

The study zeroed in on 356 Colorado hospital patients who were at low (297 people) or medium (59) risk of dying in the next year. They were all asked if they’d participated an discussions about advance directives.

  • 45% said they had “discussed” end-of-life care
  • 10% had these directives included in their medical records
  • 6% had living wills
  • 9% had designated someone as power of attorney 
  • 7% had other similar documents
About 25% of this group died during the six year study period (2003-2009). Results showed that having advance directives in place did not raise or lower a person’s risk of dying. Yes, the study group was relatively small – the drawback of most studies. Still… so much for “death panels.”

Bud Hammes, a medical ethicist who initiated the “Respecting Choices” program at Gundersen, was quick to weigh in on the “death panel” conversation.
"We just build it into the overhead of the organization. We believe it's part of good patient care. We believe that our patients deserve to have an opportunity at least to have these conversations."
Hammes labeled  as “bizarre exaggerations” the assertions that government-led death panels would encourage sick people to die. The Colorado study (above) supported Hammes’ view. He explained: 
"These are conversations that we have with our patients. They're not done in a secret room. These are open conversations involving family members, pastors, attorneys. It's part of our community fabric now. It's part of how we deliver care."
And, as I’ve said, there’s the huge issue of cost. The Dartmouth Atlas of Health Care highlights the discrepancy across the country of the cost for healthcare for people in the final two years of life:
  • At Gundersen: $18,000
  • National average: $26,000
  • At one particular (unnamed) NYC hospital: $75,000
Hammes commented on those differences: "When people see the low cost in La Crosse , there are assumptions about rationing care, about denying care, about limiting — that we limit care for our patients." According to the ethicist, patients there aren’t denied care; they have carefully considered what they want, and what they don’t want. Many make the choice to avoid excessive care.


There is a wealth of information online about preparing these end-of-life directives. Here’s a great place to start – a site provided by the National Institutes of Health:
http://www.nlm.nih.gov/medlineplus/advancedirectives.html

The Beauty of Hospice
Hospice care is one key -- and growing – component of end-of-life care choices. Here’s how the Gundersen website site describes this service:
"Each end-of-life experience is unique, but common threads of hospice philosophy offer peaceful closure to everyone facing the end of life. Knowing what to expect, and that it is normal and manageable, is essential for peace of mind.

Helping patients and families achieve comfort in mind and body is the primary goal of Gundersen Lutheran Medical Center Hospice…. Once it is decided a medical cure is not possible and the focus of care is comfort, Hospice staff will coordinate care by physicians, nurses, home health aides, social workers, chaplains, dietitians, various therapists and trained volunteers. Services are typically provided in the patient's home, but they are also available at nursing homes, assisted living facilities or Community Based Residential Facilities….

Hospice professionals and trained volunteers provide companionship, pain and symptom management, and education for patients, family members and friends sharing this last but most important journey. They give relief through their continuing presence in addition to medication, relaxation techniques, massage, memory-making and other gentle methods. Volunteers provide transportation, run errands and accompany patients when their primary caregivers must be away from home. They also assist with financial and legal concerns and offer bereavement support."
The patient-generated end-of-life directives at Gundersen – which more and more include the choice for Hospice care – can save between $3,000 to $6,000 per patient, per year. It boggles the mind to think of the enormous savings our country would enjoy if a majority of us would choose the Gundersen model.

How those billions of dollars might be spent, or saved! How we’d approach our last moments knowing we’d assumed key roles in our lives’ last important decisions, and given our loved ones that corresponding peace of mind!

P.S. There's Nothing Wrong and Much To Gain In Talking About Money as Well
I'm just back from a consult with my financial adviser about changes I'm planning in my will and in my financial planning. I won't discuss details of personal bequests with family or friends. (I change my mind too often!)  But I do intend to talk with my kids and my good friend who will be the executor and get their advice and suggestions on changes I might make, like establishing a family trust. They already have a rough idea of the extent of my assets.

I've seen situations in families where talking about money is verboten and  the surviving spouse is dumbfounded to discover that the family was wealthy and is ill-prepared to handle the sudden affluence. I'll always remember one of my friends, after discovering that she was going to inherit millions of dollars, making this comment:
If I'd known that, I wouldn't have taken his underwear home from the hospital each night and washed them out in the hotel room sink!"
(Oops! I just remembered -- not yet checked off on my "To-Do List" is informing my kids and executor where important papers are located.)

1 comment:

Hansen1965 said...

John- wonderfully done. Having watched loved ones kept alive beyond the point that they know they're alive makes no sense. If I don't know I'm alive or I can't enjoy simple pleasures, what's the point? Interestingly enough, my stepfather was recently told he has prostate cancer. He's chosen the wait and see path. And oddly enough, given he's the most "born again" of the "born again" Christians I know, he seems the most scared of dying.

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