'Death Panels' and Patients' Choice: How Should We Talk About Dying?

Death panels. Pro-lifers. Euthanasia. Rationed healthcare. Pharmaceutical greed. FDA bureaucracy. As costs and ethics battle it out in rhetoric, we still can't have a real debate about patient choice at the end of life.

A new Medicare provision quietly became effective January 1 and was repealed four days later. It was going to pay Medicare physicians to discuss end-of-life options with patients every year. Proponents said these annual conversations would help Medicare be more cost-effective and adaptive to patient's wishes. Opponents said it would coerce sick or older people to consent to die too soon. This isn't the first time the government tried to legislate a conversation between doctors and patients. New York's new Palliative Care Information Act simply requires doctors to ask very ill patients if they'd like information on hospice. It was strongly opposed by the state's medical association before it was passed last summer.

Should doctors be talking to their infirmed and elderly patients about end-of-life options? Why, the simple act of discussion confirms that options exist at all. At the heart of the matter is whether or not personal choice exists at the end of life and, if so, what is the best way for Americans to gain access to the information they need to make intelligent decisions about their final days. Sometimes patients want everything possible to prolong death. Sometimes patients want to go home to die in bed with palliative care only.

In our attempt to preserve our right to happiness, we've institutionalized the dying process to the point that we've relinquished control over the end of our lives. Death used to occur over much shorter periods of time, and it was part of the fabric of every family. Today, we give it visiting hours and turn death over to doctors, insurance companies and ethics committees who, supposedly, know something more than we do about this scary subject.

No wonder we're petrified that someday real death panels will exist to decide our fate. We have reason to be afraid. Recent published studies in The New England Journal of Medicine support the idea that patients have lost control of their care:

• Only 16 percent of doctors said they'd discuss a terminal prognosis, even when the patient asks for the truth. Instead, they offer hope and additional treatment options.
• Less than ½ of intensive care patients were asked about their preferences for life-sustaining treatment, even after 48 hours of receiving it.
• Terminally ill lung cancer patients in hospice care lived three months longer, reported being happier and had less pain than those receiving aggressive care alone, yet most patients do not get hospice information until they have only a few weeks left to live.
• Only 11 percent of nursing home residents say they want to receive intensive care treatments at the end of their lives, but aggressive care is still the standard.

It seems to me that, at best, the new Medicare provision was trying to solve a communications problem. But we all know that government can't regulate a conversation -- it can barely engage in one itself. It can't enforce honesty, and it can't help people prepare emotionally for their own lives. And it sure can't make us less afraid.

We need to separate the idea of advance care planning -- which is all about our own choice -- from the horned devil known as government-rationed care -- which is about someone else's choice for us. But so far, they remain lumped together under the term "death panels." That's just wrong.

The administration's recent actions are making things worse for people who want access to end-of-life choice. This is the second time the government has tried to enforce the discussion provision for Medicare doctors. It is the second time they've withdrawn it. Why do people think it's not in our best interest? Well, as far as I can tell, the administration kindled the conspiracy theories with its quiet appointment of Dr. Donald Berwick to the top spot in Medicare administration last year. It seems Berwick's been saying things that can lead us to think he's going to move the U.S. toward a rationed health care system with treatment for individuals based on formulas. The conspiracy fire was further fueled when Berwick announced the aforementioned conversation provision last Christmas Day. To the suspicious or frightened mind, these actions, taken when the country and journalists were looking the other way, can make the government's role in end-of-life issues seem closeted and nefarious.

I understand the argument that says it's a slippery slope from Medicare paying doctors to talk about advance care directives to government-mandated euthanasia. Sure, it could happen that way, the same way that food might eventually be synthesized into little pills or intelligent machines might one day rule the earth "Terminator"-style. But I don't buy it. I think there's another reason people don't want to discuss end-of-life choices: It isn't fun.

No law, incentive or technology will make it easier to talk about dying. That is up to us, and I'll talk about that in future posts. As a society, we've got to learn a better way to accept death as a normal and natural close to our productive lives.

Janice M. Van Dyck is author of "Finding Frances," a novel about end-of-life choices.

 

 

 

Comments

[Jillian Barclay]

01:38 AM on 02/01/2011

Death Panels? Are we still talking about the death panels that supposedly exist in health care reform? Death panels are not a part of the Reform Act, but they are a part of current health insurance company practices. They are called utilization management. They already exist at every managed care company in the United States. In an effort to provide cost-effective, efficient care, rationing exists.
Link to: http://hubpages.com/hub/So-You-Are-Afraid-Of-Death-Panels-Health-Insurance-Companies-Already-Have-Them

[thereisonlyoneparty]

01:45 AM on 01/28/2011

There are various issues with death.

First, people do not like to discuss it (as mentioned in the article), but that is more than that.

People are generally ignorant of what actually can be done to preserve life and what options are available.  People do not know what is actually done to keep someone alive.

Additionally controls over suicide (voluntary assisted and/or  mandated or encouraged) prevent people from having the necessary control over themselves and over those who are unable to make such decisions.  People do not have the option of choosing to die on their own schedule and doctors are unable to kill patients who are of little utility or are unlikely to have any type of meaningful recovery.

[Joye]

01:40 AM on 01/28/2011

I am very happy this was voted down. It's a horrid topic to have to discuss.

[waitingpatiently]

01:35 PM on 01/27/2011

I believe family and friends need to know how you want to handle things before things get to where you can't tell them. I came looking for an article on this after reading about a man who just killed his wife, then himself, because he had terminal cancer and his wife had alzheimer's. They were both 90. No family should have to go through this.

http://www.nwaonline.com/news/2011/jan/27/police-man-kills-wife-then-self/

[dresdengirl]

03:31 PM on 01/29/2011

Agreed.

[Biotunes]

06:03 PM on 01/26/2011

Some oncologists are at least talking about this issue more:

http://bioblog.biotunes.org/bioblog/2011/01/26/death-panels-return/

[Halsey]

11:27 PM on 01/25/2011

Every part of this discussion takes me to a dark place. I cut this: "we still can't have a real debate about patient choice at the end of life.." Allow me to pose THIS, IF conservatives want gov't OUT of our lives, WTF gives them any say in the end of my life (this is personal).
The monetary worry about doctor's charging for a mandated "annual" discussion out end of life.
Again, I'll say WTF? This SHOULD simple be a part of an annual or regular doctor visit. Whey should they get to bill yet another $500 for asking "do you have a DNR?". My gawd.
For me, I don't want even palliative care (I take nothing from those who do..again, this is personal). I want, if my nasty, aggressive cancer returns, or some other injury or illness that consigns me to pain and lying in bed, the rightful option to drink a nice kool-aid that will allow me to drift off in no pain, without the nausea of morphine. We ALL die. I demand as much quality as nature can give me. Then I DEMAMD the freedom to drink and leave this plane. I believe in some type of afterlife. I've NO idea what it is, but it's there whether I die in pain or gently, by my own hand gently.
I so support Compassion and Choices. I don't panic about death; I panic about dying according to someone else's terms.

[Patchdee]

04:52 AM on 01/30/2011

Thank you for sharing your brave story. I pray that many years from now when your time comes that you will be blessed with a painless death. I agree that people should have the right to decide when the pain of a terminal illness is too much to bear. When my dear, sweet father died of cancer I was just relieved that his suffering was not dragged out endlessly like others I have witnessed. Watching him suffer the last 3 months of his life was almost more than I could bear. He slipped away in his sleep one afternoon. As much as it was a shock I was grateful because I had had enough time to tell him everything I wanted to say and he knew how loved he was.

[Halsey]

11:44 AM on 01/30/2011

Patchdee, I thank YOU for your dear words and ache for those 3 months your father had to suffer through. I choose to believe, as you loved him so, that he IS that warm breeze that comes from nowhere, finds its way through the trees to touch your cheek.
Blessings

[cinemaven]

10:20 PM on 01/25/2011

My grandfather had bone cancer in 1957 and my dad and his brothers worked with his doctor to help him end his life with medication when the pain became too great and he was days from imminent death. When dad was diagnosed with lung and throat cancer, he had a long discussion with his wonderful doctor about what he wanted and she advised him to remain at home if possible so we could help him when his time came. Once he knew that his death would be on his terms, he settled down to enjoy every day he had left. The day before he died, he was laughing even though he was in intense pain and his chayne stoke breathing had started. He told the doctor it was time and she prepared a dose of morphine that would help him to an easier end. My sisters and I administered it through the night and that morning, when the sun streamed across his face and he relaxed into peace, we laughed and hugged each other.

I know my dad would not have had the quality of life he had in his last 3 months had he not known he would have quality of death. It was a privilege to help him. I hope I have the same choices he was given when my time comes but I wish we could give humans the same quick ease we give our pets instead of making them have to use morphine.

[Kathryn Maver]

09:41 PM on 01/25/2011

•Only 11 percent of nursing home residents say they don't want to receive intensive care treatments at the end of their lives, but aggressive care is still the standard.

Am I reading this right? If 89 percent of nursing home residents WANT to receive intensive care treatment at the end of their lives, it would make sense that aggressive care is the standard. So, why the "but." Not sure this is stated correctly, given the nature of the article.

[Theresa Allen]

07:47 PM on 01/25/2011

I am sure that the DNC and healthcare bill is not like this at all..This is another made up story coming out of RNC and tea party movement...All these things are in the health insurance companies whom make up whom can live or die...No, one else. Once you have no, more health insurance that is your dealth sentence...

[cmm5713]

07:19 PM on 01/25/2011

Death should never be politicized. The fear-mongering rants about "death panels" are ridiculous. Honest and open discussion about medical diagnosis, treatments and outcomes is part of ethical healthcare!

[thinkingwomanmillstone]

07:10 PM on 01/25/2011

When my father in law was in his final hospital stay. The only doctor who told us(not even him) the truth about his terminal condition was a podiatrist. The cardiologists and urologists were just pushing procedures to earn that last buck. This made my very elderly mother in law totally unprepared (denial) for his death a few hours after he arrived home. Come on doctors...the D word is not a profanity. He is not doing well or we could try some other options if YOU want does not help a woman in denial face the facts.

[crisp1968]

11:25 PM on 01/26/2011

My mother was in seriously deteriorating health for five years. Only one doctor was frank about her prognosis - others seemed focused on 'saving' or 'treating' her without much thought to her quality of life afterwards. I wouldn't assume the physician's motives were financial in your situation or hers. End of life discussions require maturity, training, and compassion - not all M.D.s posess these qualities.

[Debbie338]

07:07 PM on 01/25/2011

My husband and I are so very lucky my mother had the foresight to go to an attorney and have all her living will, DNR, and hospice wishes put into a legal document. Her doctor had the moral courage to tell her the truth, and she is at this moment sleeping peacefully in her own home in what will be the last two weeks of her life, with me at her side.

None of us had to worry about what she wanted, how much care she wanted, what would happen to her dogs, etc, because she had the courage to think about it.

Any medical system that discourages people from discussing end-of-life options is guilty of malpractice.

[Patchdee]

04:58 AM on 01/30/2011

Thank you for sharing your story. My family was also blessed that my parents discussed their end of life wishes with us children and prepared the living wills that took the decisions out of our hands.
Both of them had peaceful deaths without additional agonizing treatments that would have merely postponed the inevitable for a few more days.

[andiel]

06:11 PM on 01/25/2011

You know, it's not as if people diagnosed with many major illnesses have not thought about dying. You have to - it's there. It would be nice to talk to your doctor about it easily as another factor in your treatment. But doctors as well do not like to talk about death. I can understand that- they are all about making you live longer. But they should have to be truthful and give you the straight skinny as we would say. Not telling a patient because - why- it won't help- is not appropriate. And the patient also has to insist on straight information Talking to one's family head of time is so so important Make sure everyone is on the same page. Every family, including mine, has a story about disagreement among the children all because of love. Being able to talk to a doctor enables a patient to really clarify their own thoughts, and then later to say to the family - gee, I talked to the doc today and this is what I really want.

[bbailey123]

05:13 PM on 01/25/2011

When my Dad's lung cancer returned, I set up an appointment for he and my mother to meet with hospice. As a financial planner, I have seen too many cases where end of life decisions were left too late, and families end up in chaos instead of being together in grief. If you are a child or caregiver, YOU do your research. Don't be afraid to have the conversations with your parents before a crisis hits. Know what they want and get it in writing.

[Fi]

05:12 PM on 01/25/2011

I have a living will, my GP has a copy, I gave a copy to my local hospital, last time I was in for a small op, to keep in my medical records, and my family are well aware of it, as I am of theirs.
Its a good thing, you have options.