Include the Family Caregiver, the Primary Care Provider, in Health Care Policy Discussions

Denise

Include the Family Caregiver, the Primary Care Provider, in Health Care Policy Discussions

Denise
chess-424549_640Last week, the Institute of Medicine released its report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. I downloaded the PDF but have not yet had a chance to read. From reading the report's overview, it sounds like we've got a chaotic, disorganized care system at end of life which means we spend too much, do too much and make everyone miserable.

But you know that.

The report has received wonderful press coverage, including an Op-Ed piece  (When Medicine Is Futile) and an article (Panel Urges Overhauling Health Care at End of Life) in The New York Times.

As I read the coverage, I'm fascinated (in a not good way) that a panel was appointed to review the U.S. health care system and how it treats individuals at end of life. The panel included doctors, nurses, insurers, religious leaders, lawyers and experts on aging.

I'm fascinated that the largest group of health care providers--you, the family caregivers--wasn't included in the panel. It's amazing to me that a panel that convenes to improve delivery of care at end of life excludes those very individuals who provide the care at end of life--you.

A family caregiver is a caree's primary care provider. It's not the doctor, the nurse, the insurers, the religious leaders, the lawyers or experts on aging. It's the family caregiver who spent years (sometimes decades) advocating, treating, dispensing, caring. It's the family caregiver who makes the middle-of-the-night decision about whether to call 911, whether to bundle up and head to the Emergency Room, whether to wait until morning.

It's also this family caregiver, the primary medical provider, who receives no reimbursement in the health care system, who is desperately trying to understand end of life. It's this family caregiver which must try to figure out: Is this decline the decline that begins the end?

It's this untrained but incredibly skilled, non-reimbursed primary health care provider who holds the PhD in his or her caree's medical condition. And, so with enough knowledge about a caree to fill the biggest of any medical text book, the family caregiver works through the health care system to figure out if treatment should be pursued, if treatment that's pursued is in the best interest of a caree and if treatment pursued will work.

A family caregiver has faced so many life-and-death situations that the pressure to save a caree's life one more time can be overwhelming. And, sometimes, the family caregiver continues to save a caree's life beyond what nature intended simply because the family caregiver also has been trained to do just that--save the caree's life.

What's missing in our discussion about how we help our family members die well is how we help family caregivers--that primary health care provider--let go without regrets at end of life.

I believe that discussions about end of life must happen in the middle of life, one of the panel's recommendations. I also believe that conversations with the family caregiver about managing declines must happen at the beginning of caregiving, in the middle of caregiving and at the end of caregiving. It's essential that physicians explain to family caregivers (and carees, as appropriate) about the loss of function that accompanies declines and how to manage those declines in the caree's home (whether that home be the caree's home, the family caregiver's home or the nursing home).

I'm in an unusual position in that I witness end-of-life through written stories, many of them shared here. Often, I will tell a member or a blogger to consider hospice before a physician will. (Read "Save the Wait for the DMV.") I can't see what's happening but I can hear the declines. I hear about the constant trips to the hospital. I don't hear, though, honest discussions between the family caregiver, the caree (when appropriate) and other members of the health care team about options. Because hospitalizations don't have to be the only option.

In January 2010, I recorded a podcast (Making the Most of End of Life) with Dr. Daniel Maison, Vice President for Medical Services and Chief Medical Officer at Treasure Coast Hospice, Stuart, Fla. I regularly refer to Dr. Maison's wise recommendations:

"As we seek more and more medical attention for our caree, take advantage of the opportunity to talk to health care professionals about the future. So, for instance, during a re-hospitalization for a similar reason, on the last hospital day, begin the conversation with your caree’s physician: What options do we have other than another hospitalization? Can we prevent another hospitalization? If we can’t, what other options do we have? What kind of improvement in my caree’s condition can we expect? How can I best keep my caree comfortable?"


The experience of caregiving is all too often an experience about battles. A family caregiver becomes so accustomed to fighting for quality care that he may fight too much at the end. Battling during caregiving ensures quality care. Battling at the end can compromise quality care. It's so important for health care professionals to communicate honestly and realistically so the family caregiver can make decisions that keep their carees as comfortable as possible.

A family caregiver needs to know when the battle plans change. It's essential that the health care team help a family caregiver transition from the temptation to do too much to the peaceful art of being. A family caregivers needs to be assured that, in this battle of caregiving, she brought her caree across the finish line valiantly, honorably.

I think it's awesome that we have a great tool, like Dying in America, for discussions about end of life. As we improve delivery of care at end of life, let's make sure to include the voice of those who provide the most care at end of life--those 60 million-plus family caregivers in the U.S.

By including their voice, we can better understand what family caregivers need to be successful at the end of their caree's life. We'll know how the health care system can support its most prolific and important partner--you, the family caregiver--during a caree's end of life. We'll understand how the system can ensure the family caregiver has the best information so he or she can make the most appropriate decision. We'll get how the system can comfort and respect the family caregiver so that at the end of a caree's life the family caregiver's life can continue without regrets.

I'd love to read a report that details that.

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