End-of-Life Choice, Palliative Care and Counseling

Posts TaggedMedicare

End of life care is being influenced by politics

by Kevin Pho, M.D.

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

“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 Facebook, Twitter, and LinkedIn.

Who Failed the American People?

The federal government once again has decided not to help seniors with advance care planning. On Wednesday, the Obama administration announced it is dropping a Medicare provision reimbursing doctors for talking with their patients about end-of-life planning. People have been calling for the reimbursement policy for years – not only advocates of better care and choice at the end of life, like Compassion & Choices – but hospice workers, geriatricians, palliative care experts, public health in end-of-life planning and politicians of both major parties.

Every respected authority recognizes incentives for doctors to learn their patients’ preferences make it more likely patients will get the care they want. Most important, seniors who are ready to plan seriously for how they hope to spend their final days want this provision. Family members who might otherwise find themselves making unguided decisions for loved ones unable to speak for themselves would also benefit

Why then did the administration drop the provision, just days after it took effect? The explanation was that the process of publishing the regulation was not by the book, but certainly politics played a part. This common-sense measure has been the center of controversy for over a year and a half. The whole spectacle highlights how our political process can fail miserably to promote the public good.

Experts, advocates, seniors and families are understandably disappointed. We may all wonder where to direct our frustration and place responsibility. Should we blame opponents of health insurance reform, who cynically distorted the facts about advance planning conversations to stoke fear? Is the media responsible, for endlessly repeating the sensational claims about “death panels” – even now – long after they are proven false? Should we deplore that politicians’ own efforts to avoid the subject of death and deter conversations about the provision, ironically ignited more controversy and accusations of stealthy tactics? What are we to do when our leaders in government appear to back down to bullies?

I believe it is better to direct our energy toward solutions: solutions that we, individually and collectively, can bring about outside the political process. A change in Medicare policy is still a worthy goal, but we cannot patiently wait for our broken politics to mend. The result would be too many dying in circumstances of unnecessary torture; too many families struggling to make decisions in crisis.

Medicare beneficiaries can still have a conversation with their doctors about advance care planning. In fact every American – or at least those who anticipate that some day they may die – should have this conversation. The point of an advance directive, after all, is to prepare for difficult circumstances that could precede our deaths.

If you become unable to make or communicate health care decisions, having talked with your doctor and your loved ones, appointed a representative and prepared a written record of your wishes will be invaluable. If the process seems daunting, visit our Good to Go page. You can find help and ideas in our Good to Go Resource Guide and get everything you need free in our Good to Go Toolkit.

When the political fails, the personal can still succeed. You can make it happen. Initiate the conversation. Protect your family from a potential struggle over decisions about life-sustaining treatment.

For more information about end-of-life planning, visit Compassion & Choices’ Good to Go page.

Politics trump policy on ‘death panels’

Description: http://images.politico.com/global/v3/homelogo.gif

By: Brett Coughlin
January 5, 2011 06:34 PM EST

A federal regulation to pay for end-of-life counseling — dubbed “death panels” by critics — has been pulled by the White House . . . .

Barbara Coombs Lee, president of Denver-based Compassion and Choices – an organization that works to improve end-of-life care – said she is disappointed with the decision to pull the reg.

“Including advance planning in the wellness visit was the right thing to do. The volume of data and every respected, knowledgeable expert in the country confirmed that it was the right thing to do. We hope that what the White House has said is true and that this is some minor procedural clean up and that advance planning will be back in the wellness visit,” Coombs Lee said.

New Medicare Regulations Empower Patients

New Medicare regulations to take effect January 1 will include a provision physicians, social workers and families pushed for. The New York Times reports:

Under the new policy, outlined in a Medicare regulation, the government will pay doctors who advise patients on options for end-of-life care, which may include advance directives to forgo aggressive life-sustaining treatment.

In truth, the consultation is not about forgoing treatment, as advance directives are equally suited to requesting life-sustaining treatment. Thus, this Medicare enhancement simply encourages communication, promotes choice, compensates doctors for important care and empowers patients.

The AP explains:

The provision allows Medicare to pay for voluntary counseling to help beneficiaries deal with the complex and painful decisions families face when a loved one is approaching death.

Experts on advance directives have stressed the importance of discussing end-of-life options before patients and families become vulnerable in a crisis. The Washington Post last year hosted an online discussion with executives from Gundersen Lutheran Hospital of LaCross, Wis., to discuss end-of-life care. A pioneer in the field, Gundersen has urged this Medicare compensation for physicians who consult with patients on end-of-life planning.

With a chance to plan with their personal physician, some patients might decide, if they become terminally ill or permanently unconscious, they’ll want a peaceful death with as little intervention as possible. Others will decide to utilize every kind of life-sustaining therapy as long as medically possible. The conversation protects either decision. These conversations empower patients and make sure that their wishes are heard.

With the new regulations, Medicare will now compensate physicians for that consultation. Why is reimbursement important? When physicians are asked why they do not regularly engage in advance care planning with their patients, they report that they do not have the time for such conversations.

As Muriel Gillick wrote last year in the Boston Globe,

Survey after survey indicates that most patients want to have end-of-life discussions but most do not have them.

Most people believe individuals themselves are the best decision-makers when it comes to these very personal, private healthcare choices. In November, 2005, the Pew Research Center found a whopping 84% of Americans approve of letting patients themselves decide about extraordinary treatments to prolong life.

Re-enforcing your decision by discussing it with your doctor makes it more likely your wishes will prevail. Solid research shows that people who talk with their doctor about end-of-life wishes are more likely to have those wishes honored, and more likely to experience a peaceful, pain-free death when the time comes.

Even patients with a living will benefit from consulting with their personal physician. Laws vary from state to state. Having specific documents in order may be necessary to make sure your wishes are carried out and that the loved one you choose is empowered to act on your behalf.

As Kristina Chew writes at Care2:

But without any end-of-life planning, patients are left to the mercy of others [when they cannot] speak up for themselves. They have no control at all about what happens to them, with health care decisions left to whoever has power of attorney.

When seniors tell their doctor what treatments they would want or not want in a given situation, they protect their families from struggles over decisions about life-sustaining treatment if they became unable to speak for themselves.

This improvement to Medicare is a long-awaited response to those families who didn’t know their loved ones’ preferences when confronted with difficult decisions in an emergency. With the coming of the New Year, Medicare will begin empowering seniors to consider the care that is right for them when they face the end of life, and better ensure their wishes control the care they receive.

Everyday Elder Abuse

Tomorrow is World Elder Abuse Prevention Day. It’s a day to appreciate that elders in our society endure abusive behavior every day and to consider how we might remedy this deplorable situation.

We hear of instances in which families, caregivers or others physically assault or verbally abuse elders in their care. Whether these instances arise from criminal pathology, frustration or plain meanness, we should all be on the lookout for such abusers, report them to authorities and encourage punishment.

Compassion & Choices focuses on other forms of abuse — the ones most commonly and even routinely — inflicted on elders. These forms are rarely recognized as abuse and are never punished. I’m talking about the pain, torture and invasion of bodily integrity from “heroic” and futile medical procedures associated with end-of-life care.

Most elders in this nation die in acute medical facilities. Even those whose deaths are anticipated following a long battle with cancer, heart failure or lung dysfunction do not die in the peace of their homes. Even they, the long-time dying, must endure the cold mechanical interventions of intensive care. Often in violation of express wishes stated in an Advance Directive for Healthcare, our elders must bear insertion of tubes to measure arcane pressures, tubes to breathe, to siphon throats, to empty urine, to drain fluids, to administer food and fluids. They must submit to the constant clicking, humming, droning and ringing of the machines and alarms at their bedside.

Add to this scene severe and unnecessary suffering from inadequate treatment of pain. Add to this a rampant failure to acknowledge and palliate agonizing symptoms like breathlessness, itching, hiccoughs, nausea, dizziness, bedsores and draining wounds of surgery .

What emerges is a picture of widespread, systematic, Medicare-supported torture of our elderly, dying citizens. Shame, shame on us for using taxpayer’s money in this indefensible manner.

When an 85-year old man like William Bergman, dying of mesothelioma, moans in pain with every breath, as his daughter pleads with doctors to prescribe more effective pain medication, that is elder abuse. Compassion & Choices won a court judgment to that effect, the first of its kind, in 2001.

When an 82-year old woman like Margaret Furlong receives full cardio-pulmonary resuscitation in violation of her Advance Directive, and endures ten days of intensive care despite squeezing her son’s hand to communicate her desire to have her hands untied and machines discontinued, that is elder abuse. Yet when Compassion & Choices helped bring this case as elder abuse and failure to honor an advance directive, it was thrown out of court.

When medical providers encourage irrational hope in endless rounds of chemotherapy for advanced, end-stage cancer, that research indicates are unlikely to extend life but sure to degrade its quality, that’s elder abuse.

When institutions withhold vital information about medical practices like terminal sedation or aid in dying, which they deem immoral, and hold patients hostage to their own beliefs in the redemptive power of suffering, that is elder abuse, and abrogation of informed consent principles. Catholic facilities that enforce gag rules and bar conversations about legal aid in dying, even when a patient inquires, are doing just that in Oregon and Washington.

Compassion & Choices is not alone in naming such examples “abuse” and “torture” and citing them as human rights violations. International conventions, treaties and courts demonstrate an understanding of the veracity and gravity of such charges. Numerous internationally recognized principles address patient care and the right to bodily integrity.

The European Charter of Patients’ Rights for example sets out, “Each individual has the right to avoid as much suffering and pain as possible, in each phase of his or her illness. The health services must commit themselves to taking all measures useful to this end, like providing palliative care treatment and simplifying patients’ access to them.” Policies restricting opioid availability and causing patients to suffer unnecessary pain abridge the human right to be free of torture.

The European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment, has stated, “[E]very competent patient…should be given the opportunity to refuse treatment or any other medical intervention. Any derogation from this fundamental principle should be based upon law and only relate to clearly and strictly defined exceptional circumstances.”

This year, let’s acknowledge our national habit of over-treatment at the end of life for what it is: elder abuse, torture and a violation of human rights. Let’s stop withholding information, ignoring wishes and inflicting elders with futile, painful treatment and unnecessary pain and suffering. And certainly, let’s stop using Medicare taxes to pay for this national scandal.