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.