Where would you want to die? How would you want to die?

Here is the text of the letter I read at the Aging Better Together conference in Salt Lake City. My neurologist friend who wrote the letter has since given permission to use.

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Hey STEVEN

Here are some facts from 2010:

Medicare paid $55 billion just for doctor and hospital bills during the last two months of patients' lives. That's more than the budget for the Department of Homeland Security, or the Department of Education - and it has been estimated that 20 to 30 percent of these medical expenses may have had no meaningful impact.
About 20% of Americans will die in an Intensive Care Unit at an average cost of $10,000 per day.

The question is, where would you want to die? How do you want to die? If we don't ask the questions then we will not have options. The decisions will be made for us, particularly in the Western world. As I see it, one of the fundamental barriers to addressing this problem is people's fear of death. Nobody wants to talk about it. We are entirely too focused on anti-aging and fighting disease. It is as if we believe we can live forever. What we have forgotten is that life is a terminal condition. Death is as natural and inevitable as birth. Yet we also over medicalize birth. But just like the natural birth movement, we can reclaim our death as well. It just requires planning. It also requires education so that we can recognize end-of-life as a stage.

Steven, if you or I, or someone in our state of health gets pneumonia it is entirely appropriate to give us antibiotics and hospitalize us if necessary. If we, otherwise healthy individuals, get a life-threatening, overwhelming pneumonia where we needed respiratory support on a breathing machine, the chances are if given the support we will recover - and that level of intensive care is appropriate.

If we or someone else has diabetes, coronary artery disease, a recent stroke, is wheelchair-bound in a nursing home and has already had two other serious infections, it may be time to recognize that we are dying and such interventions would be prolonging death, not enhancing life. Hospice and palliative care treatment approach in this phase of life promotes comfort, relieves symptoms of pain and suffering and allows for a dignified death.

When a person is actively dying it is often helpful for family to know some basic physiologic facts. In death, many functions start to shut down and if not interfered with, do so in a natural and harmonious manner. As our gut shuts down, we no longer can absorb nutrients and we are also no longer hungry. If you tube feed someone who's gut is trying to shut down, they will regurgitate it or it will cause diarrhea or bloating. Similarly, dehydration allows the kidneys to slowly shut down and it allows us to become sleepy and die peacefully, asleep. The relative dehydration prevents the “death rattle” of excessive fluid accumulating in the lungs and bronchi. So IV fluids should be avoided in caring for someone who is dying. There are simple, easy, topical and subcutaneous medications that can be delivered to dry up secretions, to reduce coughing, to help with shortness of breath and with anxiety. No one needs to be in pain. No one needs to die in pain.

In the United States, the hospice benefit is entirely covered by Medicare and anyone who has been identified as being in the last six months of life is appropriate. Unfortunately the vast majority of referrals end up being in the last week of life and thus millions of dying Americans are denied this holistic approach to death earlier. Doctors are afraid to talk to family members about it less they be seen as "giving up too soon." Sometimes it is helpful for an informed family member to ask the doctor, “are there alternatives?” “Is hospice appropriate?”

Should we change the goals of care? Most doctors would be relieved and happy to discuss it but are afraid to broach the subject first.

Love
Heidi

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