Well, not death panels per se, but a shift from our insistence that death is something we can defeat with technology to an understanding that, despite our best efforts, the death rate in this country is still 100 percent. The only question about our death is whether we are in charge, or whether we want to cede that power to our families and doctors who, evidence shows, are often reluctant to give up, particularly when there are more tests, treatments, and expensive technology to throw at patients.
Two personal stories vividly illustrated this disconnect. Last year, doctors removed the breast of my husband’s 80-year-old aunt and started her on chemo when she was diagnosed with cancer, despite the fact that she has late-stage dementia.
And doctors are treating–albeit not aggressively–the early-stage vulval cancer my friend’s 90-year-old mother-in-law was recently diagnosed with.
And yet, a survey of nearly 1,700 California adults found that while more than 80% of patients think it’s important to have their end-of-life wishes in writing, less than a quarter did. Only 8% said a doctor had ever talked to them end-of-life issues.
Talking to patients about end-of-life issues could improve the way they die. So why doesn’t Medicare, which covers nearly every American 65 and older and spends about a third of its annual budget on care provided in the last year of life, pay doctors for counseling patients about end-of-life issues?
Oh yeah, because that would mean “death panels” deciding who lives and dies.
Give me a break.
We shouldn’t change how we die because it will save money. It will, but it will be a one-time savings and won’t substantially affect growth in health care costs. We should change how we die because it could mean a more dignified, less painful death for millions of Americans.
How you die depends, in part, on where you life. A seminal study by the people who bring you the Dartmouth Atlas of Health Care, which studies regional differences in medical services, found huge variations in how people die across the country. For instance, if you live in Grand Rapids, Colorado, you’ll spend about a day in the intensive care unit (ICU) before dying; but if you live in McAllen, Texas you’ll spend an average of 6.5 days–despite having similar health issues to the person in Grand Rapids. You’re also far more likely to die in the hospital in McAllen–about 45% of patients do, versus 16.7% of Grand Junction patients. And, oh yeah, the fact that Medicare spends nearly three times as much on end-of-life care for McAllen beneficiaries as Grand Junction beneficiaries doesn’t mean those in Texas are getting better care; in fact, studies find that death rates, quality of care, and patient satisfaction are often worse in areas with higher spending.
For just one week in 2011, Medicare covered end-of-life counseling. That’s not counseling patients to commit suicide when they become terminally ill or their organ systems begin failing. It’s not telling them that their care will be discontinued when their condition becomes hopeless.
Instead, it’s counseling to encourage them to think about how they want to die. Hooked up to tubes and machines in a sterile hospital? At home with their pain and respiratory distress controlled but no “heroic” interventions? In a hospice receiving palliative care and emotional support? Any is fine. As long as it is the patient’s choice.
And guess what? Most Medicare patients say they don‘t want heroic measures at the end of life. They want to die at home, not in a hospital. End-of-life counseling, evidence shows, results in just that.
Sadly, Medicare reimbursement for such counseling lasted just a week before the rhetoric about “death panels” and rationing overcame common sense.
I’m sure many physicians still provide such counseling on their own time, reimbursement be damned. They shouldn’t have to. This is one of the most important conversations doctors can have with patients. It takes a great deal of time and, yes, courage to broach this topic with a patient. Doctors need training in how to have these conversations and they deserve to be compensated for their time.
As an article from the American Enterprise Institute noted: end-of-life care is “one of the most significant problems in US healthcare.”
So why won’t we address it?
11 Responses to “Why We Need Death Panels”
Ellen Hale, MSN, RN
Debra – great post. One suggestion: RNs can be a great resource to patients and families in advance care planning. Advance care planning is not limited to end-of-life, but should apply to any situation in which an individual cannot speak for themselves, be that temporary or permanent. I am exploring ways to promote DPOA-HC in my community. This is the legal document in MI that establishes a healthcare proxy. Just as important as the document are the conversations that should accompany designation of an advocate who can speak on your behalf whenever you cannot speak for yourself relative to medical decisions. I will follow up with Dawn Farnin who posted earlier, but am also looking for others with this passion and how they were able to contribute their wisdom and experience in the communities where they live. Ellen Hale, MSN, RN ellennorahale@sbcglobal.net
Debra Gordon
Ellen, you are so right. I just wrote a series of slides on healthcare reform for a client and specifically included data on the role of nurses in the new system.
openid
I am a Health Care Ethicist who has dedicated her life's work to the end of life care medical and ethical challenges persons and patients face daily. As a caregiver for both my parents who died in 2006 from unexpected illnesses, I began to ask more questions and request accountability for decision making related to end of life care choices. I am now dedicating my life's work as an advocate for the voices of vulnerable persons that go unheard or are silenced when they are dying. I believe a person's end of life wishes are not honored has to do with moral accountability; each of us has a responsibility to advocate for our end of life care wishes by documenting them (I am working on a new application for this) AND sharing them with trusted healthcare professionals and loved ones/caregivers. Our current fragmented healthcare system is not structured to honor end of life wishes during transition care and the process of dying because there is not a collaborative effort to learn what those wishes are and how to honor dying persons/patients by honoring their wishes. I do not believe the intent is driven by malice; there are many people like myself who are passionate about end of life care issues and want what the dying want but there is a huge gap in the conversations related to death and dying. Yes, there is fear, but many would be surprised to know that fear is more prevalent within the foundation of our healthcare system as opposed to in the minds and hearts of the dying. As a hospice volunteer, many dying people discussed death with comfortable words, direct intent, and moral accountability not to disappoint those who love them, care for them, and treat them (healthcare teams). Is our health care system really listening to the voices of the dying?? Or, is it hearing what it wants to because it is less of a moral challenge to address; professionally and personally.
I formed my own company, ESCS (Ethical Stewardship for Community Solidarity) in order to respect the vulnerable wishes of the dying by addressing the moral challenges embedded in their family, cargivers, loved ones, and healthcare professionals relationships. I am setting up a webiste next week: mystorieshavevoices.com that will allow me as a Narrative Health Care Ethicist to be a collective voice for the dying who want their wishes heard and honored. There is more I am accountable for vulnerable persons facing end of life care decisions; education…I am beginning to teach health care ethics courses for end of life care healthcare professionals AND the public. Thank you, all of you, who bravely share their own stories and concerns because you are heard.
Dawn Ann Farnin, MSHCE dafarnin@gmail.com
Debra Gordon
Thanks, Jun. You are so right. That's one reason I'm writing a book now called “Talk Back to Your Doctor: Take Control of Your Health.” I'll be posting more about it here.
Jun
Bravo, Debra. Great post.
I have to suspect that the insistence on keeping patients alive as long as possible and spending as much $$$ as possible carries a financial incentive for some parties, perhaps the cash-strapped hospitals and physicians, and companies who can charge 100K a year for an anti-cancer drug.
Patients are often not told the truth about their options and the quality of life issues. Many patients don't even know they HAVE options.
amy1971
This is an excellent post. My father died this spring. He was diagnosed with cancer in his lungs and vertebrae and treated for lung cancer (though the primary was never determined… that is a whole other topic that makes my blood boil!). He was diabetic and had recently had pacemaker implanted. Not only was end of life care never addressed until it was too late, he and my mother were never counseled on how best to manage his diabetes while having chemo and how his pacemaker would or wouldn't be impacted by the treatments. It wasn't until he ended up in the hospital after a diabetic shock that end of life care – palliative care, which was an unknown word to my family – was introduced. I participated in the discussion via conference call and was stunned by how the conversation was handled as I knew what was being implied long before it sunk in to my family. They are in a rural area of South Dakota and I have worked in health care for my entire career. I know too much. There is so much that could have been done differently for my father and my family. It still makes me angry. But all of that said, I now have a much greater understanding of the so-called death panels and feel they are absolutely necessary in order for a person to have a dignified and comfortable death.
Debra Gordon
Thanks so much, Amy. I'm so sorry to hear about your dad. My own father died of pancreatic cancer in the 1980s and my mother wouldn't consider hospice until about 3 days before he died. Far too late for it to do any good.
This is one reason I'm working on a book now called “Talk Back to Your Doctor: Take Control of Your Health.” I'll be writing more about in the near future.
Cindy
So often the “patient” isn't willing to confront family about the issue. As in my family, they are labeled as “giving up.” Won't try, etc….give me quality over quantity any day!
Debra Gordon
Cindy,
I think one problem is most Americans equate quantity with quality and don't understand that too often in healthcare quantity means exactly the opposite.
Thanks for commenting!
Debra Gordon
Thanks so much! And thanks for sharing. I also think that as long as we continue to pay for procedures and services provided, rather than rewarding outcomes and quality, we won't be able to address this problem.
Unknown
Excellent post, Deb! I could not agree more. My great-grandmother died 2 years ago at age 93, following a surgery that was arguably unnecessary (ie, the problem was not going to be what killed her). Following that, she developed a c diff infection that ultimately did kill her. There is just no purpose in so many of these decisions except to keep hospitals busy and their income stream flowing. Unfortunately, it seems we are all too frightened of death to engage in real, anticipatory conversations about it. We have to get better and more proactive about this.