End of life care is being influenced by politics

A version of this op-ed was published on April 12, 2011 in USA Today.

End of life care is being influenced by politics“Would you like to discuss your end-of-life plans today?”

It’s a question that I ask my patients, although not as often as I would like.  Talking about death may be uncomfortable, but it’s a conversation that needs to happen more often.

We can never know for sure when health disaster will strike, robbing us of the ability to make our own medical decisions.  More than 40% of elderly Americans will need to make crucial medical decisions before death, yet most of them will lack the decision-making capacity to do so at the time.

This places significant stress on family members, who then must make life or death health decisions on behalf of the patient.  When the Annals of Internal Medicine looked at the impact of surrogate decision making, words like “intense,” “painful,” “traumatic,” and “overwhelming” were used to describe the experience for loved ones.  Emotions tended to be less negative had they been aware of the patient’s end-of-life preferences beforehand.

The reality in primary care is that these important conversations are too often skipped, since they take time, do not conveniently fit into the 15- or 20-minute appointments typically allotted to patients, and are not billable. Those are partly reasons why, despite the fact that 9 out of every 10 patients want to discuss end-of-life care with their physicians, more than 60% of dying patients did not recall having such discussions with their doctor.

On January 1st this year, a Medicare proposal sought to encourage these conversations by including it during the annual “wellness visit” provided to beneficiaries.  That would have been an ideal opportunity to ask whether patients wanted to discuss their end-of-life plans, alongside other preventive measures such as screening for cancer, diabetes, or depression.  If the time wasn’t right, patients could simply say, “No, thanks,” and move on.  But I find that most are willing to engage in a thoughtful discussion of their end-of-life wishes in a comfortable, routine setting, rather than being forced to do so in a hospital emergency room or intensive care unit.

Days later, however, the Obama administration abruptly reversed course and revised the language to remove all end-of-life references, a move the New York Times said was due to “clear political concerns.” House Speaker John Boehner called the Medicare provision a step “down a treacherous path toward government-encouraged euthanasia.”  And the Washington Post’s Charles Krauthammer called Medicare reimbursements for end-of-life planning a “possible first slippery step on the road to state-mandated late-life rationing.”

Opponents often link end-of-life planning to an insidious attempt to pare down health costs.  While it’s true that a disproportionate share of Medicare dollars is spent during the last year of life, up to 30% of those expenses do not benefit patients.  Incentivizing doctors to take the time and clarify one’s end-of-life wishes can help reduce potentially harmful treatments.  Indeed, according to a 2008 Archives of Internal Medicine study, patients who had end-of-life plans fared better when compared to those who didn’t, as they received less aggressive care and had a better quality of life near death.

Rationing care, cost control, and the fictitious concept of government-sponsored “death panels” are never brought up during my end-of-life conversations with patients.  Instead, many find it an empowering discussion that promotes their autonomy and helps ensure that they receive the care they want.

Patients should be given more opportunities to express their end-of-life wishes.  By allowing politics to influence their decision, Medicare has denied doctors chances to engage patients in this important conversation.

Kevin Pho is an internal medicine physician and on the Board of Contributors at USA Today.  He is founder and editor of KevinMD.com, also on FacebookTwitter, and LinkedIn.

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  • http://Www.twitter.com/alicearobertson Alice

    Doctors are seen as life savers, not takers. It can be very uncomfortable for both doctor and patient. The discussion is fine, but maybe a social worker should do it (when the neurologist had bad news for us about our son’s brain tumor we walked into find a social worker there. I did want to see her, but she was wonderfully supportive and had good advice).

    I tend to agree with your ideology, but death panels are a reality, not fiction…look at Arizona….aren’t they denying care? Krugman…didn’t he say they are necessary to keep costs down? What about IPAB’s? Aren’t the last six months of a person’s life, supposedly, the most expensive?

    I think issues are getting mixed….but we do know there are morality issues intermixed with goodwill and politics.

  • Bladedeoc

    The government works by politics. Don’t want politics, don’t let the government get involved, otherwise stop the hand-wringing. Oh and “paying for” = “get involved.”

    • Marc Gorayeb, MD

      Conversely, if you aren’t personally paying for at least some of it, you have no incentive to get involved, to help limit unecessary services, and to make sure you get value for your money. That’s the problem with free care.

  • http://onsurg.com/about Chris Porter MD

    Near the end of a discussion of an upcoming colon resection for cancer, I ask the patient who he/she lives with, where the children live, etc. Then I ask what the family’s plans are for when the patient needs help with daily tasks. Blank stares follow, most of the time. I explain that I’m not predicting a bad outcome from surgery, rather, the near-certain outcome of simply living to old age. “Gonna need help someday – have you and your family talked about that? Good idea to do so before your cancer operation.” I get the sense there is some relief to have this discussion *assigned* by the doctor, as I see a generational reluctance to address the topic.

    End-of-life discussions prevent patients from falling victim to the momentum of emergency health care: http://porteronsurg.blogspot.com/2011/04/momentum.html

  • Alice

    But is that really and end of life discussion, or quality of life discussion? This seems to be justified probing to prepare a patient and encourage them they will live. Sometimes patients need your counsel to awaken them from a slumber. I wrote to our doctor that as hard as this cancer journey with our daughter has been I am glad we met him…I thanked him for his “velvet hand” approach.

  • http://healthasahumanright.wordpress.com Health as a Human Right

    Precisely as you say, end of life discussions are uncomfortable but necessary and I agree that primary care physicians should be allowed time to have this discussion with their patients. These discussions are not about the politics or policies regarding end of life care – palliative measures, DNRs, or other advance directives. These discussions are simply about bringing the patient to consider their options.

    Today, my dear friend passed after a long fought battle with colon and ovarian cancer. She always had so much hope. About a month ago she was hospitalized for several complications and at that time it was clear, her time with us would not be long. I, being only a health policy attorney, knew the importance of bringing these issues up. I talked to both my friend and her husband about whether they talked about what she would want in the end. He said – well I know she wants to be cremated and she doesn’t want a religious service. But that was all. There were a lot of other issues to discuss, and not being the best person to guide them through these options, I asked for the patient advocate. Yet it wasn’t until my friend was transitioning back home from a few days in hospice that someone finally talked to them in detail about options. In my opinion, that is far too late.

    There is no perfect person to bring these issues up – whether its your pastor, friend, attorney, social worker, or doctor. However, enlisting a doctor is a first step. While I agree with the comment above that a social worker should help walk through this discussion, I think primary care physicians have an incredible opportunity to start the discussion. These doctors likely have a rapport with their patients, know where they are in their life and can consider their family, culture, and personal background going into this discussion. They have the information at hand or can refer as needed. But most importantly, they can have this discussion early on – help patients understand the importance of considering these options.

    My friend in some ways was fortunate to have time to decide what she wanted for the end of her life. Many do not. In emergencies, all of the sudden family members are making decisions for their loved ones – decisions about whether to keep someone alive or let them go, what measures should be taken, organ donation. And after that, they have to decide how to hold the memorial. Without ever having an end-of-life conversation, the family cannot truly know if this is what their loved one wants. Then come in courts and bioethic committees and hurt and confused emotions in a time of mourning.

    End of life care is not about death panels or funding, but about personal decisions. We encourage doctors to connect with their patients and involve them in their care (see recent posts on this site) and this is one opportunity to do so.

    No one really wants to have their mortality placed so blatantly in front of them by being asked if they want to discuss their end- of life plans. But we cannot avoid the subject because it is uncomfortable. It is truly more humane to have this discussion for all – for the patient and their family. A trusted primary care physician is the best person to start the conversation – someone trusted and knowledgeable, someone only concerned with what is in the patient’s best interest, what the patient needs and wants when their time comes.

  • polisigh

    Discussion of end of life care differs from state-to-state and can vary hospital-to-hospital. The decision can impact even who to call for emergency care. Doctors, lawyers and family members must all be involved.
    Republicans demagogued responsible health and fiduciary planning into death camp hysteria and a political advantage. Any healthcare plan must include a strategy to reduce the staggering wastes of useless care for terminal and vegatative cases.

    • http://Www.twitter.com/alicearobertson Alice

      Demagogues? Hmm….for those who value life and feel this ideology has consequences? What if some truly see this as a moral issue over economics? I am not talking about DNR’s or decisions made on a personal basis. I am talking about decisions made for you for purely budgetary measures? Sometimes we speak too broadly and label in an effort to avoid discussion of the very problem we prefer to deny.

  • http://google Linda

    Money, government, pharmacuticals, insurance companies and an extrememly ill or dying patient simply lethal usually for the patient, even more so for the underinsured. In 40 years of nursing practice I have seen this senerio. A patient arrives at the facility, and after an initial assessment, the next thing the most physicians look at is what kind of insurance this patient has. If it pays well ever test that can possiable be done, needed ot not gets done, if it doesn’t pay so well, there is minimal intervention which results in the patient dying or if lucky enough the insurance is exhausted, and miracalulsly he’ cured! What disturbs me even more are the patients who have no family or friends to watch over them. This patient more times than not is indigent. As I make my rounds these patients are in a room alone, door closed, with a MSO4 gtt. It is virtually impossiable to find a rational for this treatment/medication.
    It is what it is euthanasia!
    It seems to me that it isn’t health care that needs reforming.
    I couldn’t agree with you more in you blog the the pharmacutical and insurance companies bare a majority of responsibility in health care cost. But the pharmacutical companies are for another day! Linda

  • Dr Chris

    I usually try to raise the issue long before this discussion is needed, so that as the patient declines, it is not perceived as “giving up”. I tell my unfortunately true story of an elderly patient who listed a cousin half-way across the country as her POA. When the patient became very ill and arrived in the ER in extremes, I called the cousin. She had not seen or talked to the patient in 5 years. She had no idea. It was 2 am. Both of us were dumfounded.
    I relate this story, with humor, explaining that this is why the patient needs to discuss DNR with his/her family. I also note that she needs to pick a family member who will respect her wishes, and why.
    For me, this is never a budgetary issue, I fight tooth and nail for my patient-as long as there is a quality of life, that each hospitalization is not longer with more complications related to that decline. There are no “death squads” . There are under educated staff, who amy not have seen a functional elderly person, and have trouble understanding delirium. But that can be remedied.

  • Anonymous

    shouldn’t responsible medicine also include discussions with patients about end of life care? and why is it dependent on reimbursement for those discussions?before procedures are done, an informed consent must be obtained. How can a person make decisions about end of life care if there is no discussions about outcomes and goals> I am a certified hospice and palliative nurse and havie been working in hospice for over 9 years now, and it still amazes me that we as a society still are unable to accept the one inevitable fact.. that we are all going to die some day. Patients need to have these discussions so they can maintain some degree of self- determination about how they spend their last months and how and where they die. It shouldn’t be about the reimbursement but should become part of responsible medical practice to include these discussions

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