Your end-of-life plans won’t work if you don’t talk about them

The headline seems obvious, right? But unfortunately, failing to tell your loved ones what type of care you would want if you suffer from an illness which will eventually lead to your death is all too common. The Boston Globe had an essay a few weeks ago, which was written by a young physician who had observed the results of a failure to communicate:

Mrs. M found herself at home, unable to breathe. Her husband called 911 and she was rushed by ambulance to the emergency room. As her shortness of breath worsened, all she could say was “help me.” The medical team immediately jumped into action ordering blood work and a chest X-ray, placing an IV line and administering antibiotics. Eventually, anesthesia was called to insert a breathing tube and Mrs. M was placed on a ventilator because she could not breathe adequately on her own. Unfortunately — and unbeknownst to anyone present — this was not the type of help she sought.

Mrs. M had spent the last few months under the care of a hospice nurse with whom she had developed a close relationship. On several occasions, she explained to this nurse that she had no desire to be placed on a ventilator again, as she had been so many times in the past. The next time her lung disease worsened, she wanted medicines to make her comfortable so that she would not feel the awful sensation of ‘air hunger’ that accompanied her severe shortness of breath. She knew that her lung disease was slowly killing her, and she hoped to spend her final days at home, comfortable and at peace, rather than in a hospital hooked up to a machine.

 

To ensure that her wishes would be met, Mrs. M designated her husband as her official “health care proxy” should she lose the ability to make her own decisions. In Massachusetts, this involves signing a document designating a spouse, family member, or friend to take responsibility for health care decisions if an individual is unable to do so. When we as doctors can no longer communicate directly with a patient because of their mental or physical illness, we seek the advice of the health care proxy so as to best honor our patient’s wishes.

 

While Mrs. M had outlined her desire for comfort-focused medical care to her nurse, she never broached this difficult subject with her husband. He was unaware that she never wanted a breathing tube or ventilator, or to be re-admitted to the hospital. Only later, after speaking with Mrs. M’s nurse, did he understand how much his wife had quietly suffered from her disease and why she hoped to pass naturally at home rather than in the midst of aggressive medical care.

You can’t blame the doctors for taking action if you do not communicate your wishes to your health care agent. I’ve had conversations with clients who wanted to name their children as their health care agents but were reticent to have candid discussions about the full extent of their medical problems or did not want to have a difficult conversation about death. At the same time, there are some adult children  who simply cannot stand the thought of having to talk to their parents about the parents’ eventual demise.

But at the same time, even when you communicate with your primary care providers (here, the hospice nurse), it doesn’t mean that those wishes will be passed on to other doctors and hospitals. There is a new tool in Massachusetts called MOLST (Medical Orders for Life-Sustaining Treatment) which promises to help. Unlike a health care proxy, which is a legal document, a MOLST is supposed to be entered into the medical record of a patient facing late-stage illness. The MOLST form contains specific information completed by the treating physician and patient concerning the patient’s desires for how end-of-life care should be managed under different scenarios. MOLST is being gradually rolled out, with the goal of widespread use throughout the state by early 2014.

This sounds like a good idea — as long as the paperwork actually follows the patient in either electronic or paper form. I’m not convinced that will happen if there is more than one hospital chain in the area like there is in the Boston area. I’ll be interested to see how MOLST pans out.

When the truth doesn’t serve your goals, scare them to death.

Section 1233 of the House health care reform bill provides Medicare funding so doctors can be paid for a voluntary conversation with elders, who can be given “an explanation by the practitioner of the continuum of end-of-life services and supports available, including palliative care and hospice, and benefits for such services and supports that are available under this title.”

Now, you may not agree with the health care reform bills. You may not even agree that it’s needed or desirable. But are the national Republicans and their pals in talk radio so intellectually and morally bankrupt that they’ve resorting to this reprehensible garbage in an effort to kill health care reform?

But on right-leaning radio programs, religious e-mail lists and Internet blogs, the proposal has been described as “guiding you in how to die,” “an ORDER from the Government to end your life,” promoting “death care” and, in the words of antiabortion leader Randall Terry, an attempt to “kill Granny.”

People need facts to make informed choices. Doctors and nurses are trained to present information about options for treatment in a manner which encourages patient autonomy. Whether the medical provider personally agrees or disagrees with your decision is not legally or ethically relevant. What is relevant is that the patient receives the data needed which in combination with one’s own religious or moral viewpoint, will lead to an informed choice; and then have well-drafted advance directives which communicates that choice with treatment providers and loved ones included with your estate plan. Not only will you get the care that you want to have, but you make sure that your loved ones aren’t forced to go to court to seek guardianship in order to authorize such care.

But then, what we’re seeing is the opposite of intellectual honesty.

The attacks on talk radio began when Betsy McCaughey, who helped defeat President Bill Clinton’s health-care overhaul 16 years ago, told former senator Fred D. Thompson (R-Tenn.) that mandatory counseling sessions with Medicare beneficiaries would “tell them how to end their life sooner” and would teach the elderly how to “decline nutrition . . . and cut your life short.”

House Minority Leader John A. Boehner (R-Ohio) and Republican Policy Committee Chairman Thaddeus McCotter (Mich.) said they object to the idea because it “may start us down a treacherous path toward government-encouraged euthanasia.”

Remember, these are many of the same people who rammed a measure through Congress endorsing the State of Florida’s effort to keep Terri Schiavo alive, arguing that the legislature should interfere with the acts of her legal guardian and the courts because she didn’t have a living will. So, by this shameless logic, paying doctors to have voluntary discussions with their patients about medical options and advance directives leads to earlier, state-sponsored deaths, but it’s perfectly all right for legislators to interfere with the most painful discussion a family can have because there was nothing in writing to tell a doctor what to do.