'Death panels?' What really happens in end-of-life discussions

Diane E. Meier, a geriatrician at Mount Sinai Medical Center in New York and director of the Center to Advance Palliative Care, explains how advance-care planning empowers patients.

Despite persistent falsehoods alleging that pending health reform legislation would create panels to decide which patients were worthy of living, the facts surrounding the debate are clear – and they clearly disprove these misrepresentations.

The provision in question would compensate physicians for offering their Medicare patients an opportunity to engage in  conversation about their preferences for care under future conditions of serious illness - this is advance-care planning. My patients are uniformly fearful of being overtaken and harmed by the health care system, and their greatest concern is that they will lose control over their lives and their options once caught up in it. They have read about hospital infection rates and medical errors, and they have watched and worried as friends and loved ones with serious and chronic illnesses try to negotiate the fragmented and confusing health care system.

My patients want to know that their goals, values and hopes will be the primary considerations when healthcare decisions need to be made. They are frustrated by how little time most of their doctors can devote to talking with them and how rushed these encounters have become. They hesitate to ask questions about their illness because they are afraid to take any extra time that might burden their busy doctor, who is always harried, always behind, and always has a waiting room full of other patients.
The reasons for these time pressures are clear. Physicians do not have time to devote to patient/family counseling because these so-called cognitive services are so poorly compensated that few can afford to provide them. Doctors are paid for doing things to patients – X rays, chemotherapy, procedures, surgery – but we are paid almost nothing for talking with our patients.

This is what these conversations are like in the real world of doctor and patient.  So that the patient's voice and values remain front and center when serious medical problems arise, I ask them the following question: "Who would you trust to help me make health care decisions on your behalf if you were unable to make your own decisions? This person can be a family member but does not have to be, and they will only be asked to represent you if and when you are unable to represent yourself."  Most of my patients appoint one or more of their children, or their spouse, but some prefer to spare their family this burden of responsibility and appoint a friend or other counselor. 

Secondly, although most of us really do want all the facts about what is happening to our bodies, some of my patients prefer to sustain a certain level of denial.  That's fine, but I need to know how they would like me to handle information and shared decision-making.  I say, "Some of my patients like to know all the details about their medical condition and their treatment options, and others prefer a more general outline, or ask that I discuss treatment planning with a family member.  Which kind of person are you?"  Roughly 90% of my patients respond that they do want to know everything, but a substantial minority do not. If I try to force unwanted information on this group of patients, they will no longer trust me and are unlikely to feel safe in my care. Hence, I will honor their request that I confer with their family when medical decisions need to be made, though I will check in frequently to see if they are ready to learn more as time passes.  

Lastly, I ask my patients one more, very important, question.  "If you ever got so sick that your brain was permanently injured to the point where you could no longer recognize or interact with your loved ones -  the kind of condition that Terri Schiavo had or what typically happens in the late stages of Alzheimers’ dementia - in this situation some of my patients say they would want care focused only on assuring their comfort and not on prolonging their existence in this state; but others tell me they would want everything possible done to prolong their existence no matter what the quality of their mental functions or ability to connect with others.  Which kind of person are you?"  

Again, the clear majority opt for comfort measures when they reach this state of loss of self. But a consistent minority are either so fearful of death or so convinced that a miracle will restore them to health that they tell me to "do everything to keep me going, no matter what."  Whatever they say, I write down in the medical record as a guide for when (not if) serious medical problems arise.  The patient's wishes and goals are my guide as I work with other doctors and family members to try to come to the best plan of care.  Whenever possible and with the patient's permission, we have these conversations together with family and surrogate decision makers.  That way, when the family decision makers are faced with wrenching and painful medical choices for a very ill loved one, as they inevitably will, they know what the patient's wishes are, and they take great comfort in their ability to honor them.

Family decision makers who know what their loved one - the patient – wanted, and who are able to advocate for these wishes and goals, are better able to heal after their loss and are less likely to undergo complicated or prolonged bereavement periods.  Of course, these conversations are not mandatory, but I have yet to encounter a patient who is not tremendously relieved by the chance to talk out some of their deepest worries and fears about what might happen to them in the future and how we will work together to face these situations.  I have this kind of discussion with all my patients, early in my relationship with them, just as I discuss getting a flu shot, or wearing seat belts, or using sun block outside.  It is a routine part of good primary care.  It is not rationing. It is not euthanasia.  It is not a death panel. These are outright lies.

Actually compensating doctors to speak with patients about their illness and its implications is a small effort to restore the balance back towards our patients and away from the financial pressures in our medical marketplace. It recognizes that conversations between doctors and patients about the patients' illness, the patients' goals, the treatment alternatives and their pros and cons are time consuming and require skill and expertise. It is a misnomer to call these "end of life" conversations. These conversations are needed throughout the typically multi-year course of a chronic illness (such as cancer or heart disease or emphysema) and are not limited to the "end" of life.

The real truth is that we doctors don't know who is actually at the end of life until only a few weeks before death in most cases. Advance-care planning  is a small step towards restoring power and control to the objects of all this effort and expense – the patient.

 

Comments

[Marion]

In June of 2006 my former husband, father of my three children had a stroke. He had no will and no healthcare power of attorney. Fortunately my children and I were able with the help of an attorney to implement a healthcare power of attorney. What has been obscured in the outcry of the far right is the simple fact that people need to be prepared for a heart breaking decision should the need arise. What a pity that the well intended inclusion of this option at no charge to the citizen has been misconstrued by the far right in an effort to placate the HMOs in this country.

[Marion]

I wonder how many people realize that the salary of Michael B. Callister, Pres. & CEO ofo Humana was $10,312,557
in 2007. Our goverment pays Humana san additional $1,188 per each Medicare Advantage participate each year. This is in addition to the $1,176 paid by each Medicare participant and does not includ the co-pay each of those participant pays for his Advantage plan, in my case $29 per month. So, in fact my healthcare is costing $2,712 per year and does not include the co-pays for visits to doctors.

[Maia]

Death should be embraced not feared. Here in the US our culture believes we need to live no matter what. We need to learn that part of life is dying and it can be a blessing.
I have been in healthcare for over 30 years and have seen many high tech changes. Are we really improving our lives for our very young and very old? We do need to be the ones to do advance planning and make the choices when we can.
Is there really anthing wrong with choosing a dignified death.

[Dr Peter Pflaum]

POLICY AND POLITICS:
To get a change in the American society takes good policy, tested at the state and local level, and good politics. What is the “hook” or appeal in selling health care reform? The system is out of control and requires fixing (as has been true over the last 50 years) but effectiveness and efficiency are hot political buttons. What does it take to crystallize public opinion? Amazon's Edward L. Bernays Page
The progressive’s reforms at the turn of the century were based on SHAME and GUILT. The shame of the cities and meat packing was direct threats to citizen’s welfare and safety. The PR message now should be “are we the only modern society without universal health care?” Canadians are taken care of, French are taken care of, and people are better treated in dozens of countries at less cost! Stop being so afraid of the truth and the lie that we have the best in the world – we are in grave danger, there is a crisis, panic .. Health Insurance Costs: http://www.hlc.org/HRD_Common_Ground_--_FINAL.pdf
WRONG: NOT TRUE - FACT CHECK…AND IMPORTANT
The face of clear and present danger should be personal stories of middle class families destroyed by getting sick. The cornier the better, more soap opera the better, the more painful the better. We are talking about deep sub conscience motivation below the rational mind; as is most effective advertising. Bernays was an outspoken proponent of propaganda as a tool for democratic and corporate manipulation of the population. His 1928 bombshell Propaganda lays out his eerily prescient vision for using propaganda to regiment the collective mind in a variety of areas, including government, politics, art, science and education. To read this book today is to frightfully comprehend what our contemporary institutions of government and business have become in regards to organized manipulation of the masses.
The American public is not conservative about money. They are not financially conservative, but motivated by immediate satisfaction. The traditional middle class put off purchases until there was money in the bank, (puritan ethic) while lower class people demanded immediate gratification. If they want something they pay for it on the “old never never” credit cards and then put it on their equity loans using their homestead as an ATM machine. Thus was the cause of the economic crisis.
They vote for politicians who promise benefits without pain or taxes, the “check is in the mail campaign”. The “conservative movement” is more social than economic and based on prejudices between regional, racial, tribal, moral family values, religious, WASP vs. foreigners not self interest since people are voting against their own economic self-interests. Republican get tax cuts for the rich 1% by their “values” agenda based on prejudice and fundamentalism. The rich fear a liberal popularism of buying vote with an endless stream of entitlements the rich end up paying for.
In Health Insurance Market the fault does not primarily lie with the insurance industry but a twist in employer based policies. Two thirds of the premium cost paid by the employer is invisible to the employee. If the employee pays $300 a month the company pays $600 for a total of $900 or $10,800 a year. If there is a prepaid plan that is more effective and efficient and cost less but is not as convenient the small reduction in employee cost is not motivation. The employer needs to reward the employee with a share of the employer’s savings. The employee pays $200 a month and saves $100 but the employer saves $200 that needs to be paid in wages so the full $300 or $3600 saving is manifest. The saving should not be taxed but be pretax as are health benefits.
BREAVEHEART:
A new AMERICARE in the Centers for Medicare and Medicaid Services (CMS), determines to be federally qualified or that are an approved Competitive Medical Plan (CMP) http://www.opm.gov/insure/health/planinfo/types.asp
What is needed are new comprehensive, Medicare medical plans on a regional and state wide basis. In short it opens the Medicare system to everyone in the exchange. At the same time it moves Medicare and Medicaid to Medicare or service alliances based on per capital costs or bundled, global payments that could decrease “fee for service” and cut costs by another 20%. This is a form of single buyer that has proved itself the best may to reduce costs and improve quality. The Clinton plan was universal as in all other industrial countries. BUT….
One person’s waste, abuse or fraud is another person’s income, their private plane, and Palm Beach mansion. The policy that could solve the problem is not political possible, what is politically possible does not solve the problem.
The reason “the public option” is critical is that employers can migrate from over priced private plans to a form of Medicare for all. When almost everyone is included there is less cost shifting (where uncollected bill of uninsured are paid by the insured) and premium could decline. The insurance companies don’t want public competition; and the medical community is not excited by the change that reduces their incomes. NOW THE PLOT THICKENS: