When the Patient Won’t Ever Get Better
— A recent New York Times article by Daniela J. Lamas, M.D., relates the case of a 90-year old patient who arrived at the hospital by ambulance with a tear in her aorta wall, requiring emergency surgery. The surgery went well, but it was followed by a number of complications rendering her dependent upon the ventilator. After another surgery for a tracheotomy to facilitate the ventilator and a third surgery to install a feeding tube, the patient spent a few weeks in the I.C.U., followed by transfer to a long-term acute care facility, where eventually she achieved a delicate stable condition. Before the surgery, she had been doing well- living alone, fixing her own meals, playing tennis and generally enjoying life. In stark contrast, after her extended stay in hospital, the author describes her condition, “There she was – neither dead nor truly alive – stuck it seemed, in limbo. *** With her constellation of ventilation dependence, infections and delirium, she had what doctors call ‘chronic critical illness.'” Dr. Lamas reports that:
[T]here are about 100,000 chronically critically ill patients in the United States at any one time, and with an aging population and improving medical technologies, this number is only expected to grow. The outcomes of these patients are staggeringly poor. Half of the chronically critically ill will die within a year, and only around 10 percent will ever return to independent life at home.
We can all imagine the scenario where our parent has a health crisis and all we want to know is whether she survived and is she “stable.” After time passes, we learn that she is stable, but is chronically critically ill and won’t improve. Here’s how Dr. Lamas describes the situation:
In the early moments of critical illness, the choices seem relatively simple, the stakes high – you live or you die. But the chronically critically ill inhabit a kind of in-between purgatory state, all uncertainty and lingering. How do we explain this to families just as they breathe a sigh of relief that their loved one hasn’t died? Should we use the words “chronic critical illness”? Would it change any decisions if we were to do so?
Readers’ comments to the article are as enlightening as the article itself. Samples:
- If this is not what you would want for your parents or yourselves, PLEASE act now to have The Conversation with the people you care about. Letting others know what your wishes and preferences are can go a long way towards preventing this outcome. ~GeriMD, CA
- Thinking about the patient experience is starting to be emphasized in medical school curriculums, but it is all from the MDs perspective. We are taught to provide MD-centered care by MDs who are generally career specialists and/or academics but told to provide “patient-centered care” by the same MDs who have practiced their entire careers in our twisted warped fee for service health care system that is the antithesis to patient-centered care. ~Jamie, NC
What might a lawyer do to help in this situation?
We recommend that all of our estate planning client create a Health Care Power of Attorney and a Living Will. A Health Care Power of Attorney is an “advance directive” by which they designate a person who is authorized to make health care decisions on their behalf when they are not able to do so themselves. A Living Will is a directive to health care providers concerning a person’s wishes about the use of medical technology to sustain life artificially when there is no possibility of recovery. POLST is not for everyone; only patients with serious illnesses or frailty should have a POLST form. For these patients, their current health status indicates the need for standing medical orders for emergent or future medical care. For healthy patients, an advance directive is an appropriate tool for making future end-of-life care wishes known to loved ones.
POLST orders and DNR directives are provided by physicians, not lawyers, for patients who are gravely ill or frail and who are nearing the end of life.
POLST is not for everyone; only patients with serious illnesses or frailty should have a POLST form. For these patients, their current health status indicates the need for standing medical orders for emergent or future medical care. The POLST form is completed as a result of the process of shared decision-making. In it the patient discusses his or her values, beliefs, and goals for care, and the health care professional presents the patient’s diagnosis, prognosis, and treatment alternatives, including the benefits and burdens of life-sustaining treatment. Together they reach an informed decision about desired treatment, based on the person’s values, beliefs and goals for care.
- The POLST form enables physicians to order treatments patients would want and to direct that treatment that patients would not want, those they consider “extraordinary” and excessively burdensome, shall not be provided.
- The POLST form requires that “ordinary” measures to improve the patient’s comfort and food and fluid by mouth, as tolerated, are always provided.
- The POLST form is actionable and prevents initiation of unwanted, disproportionately burdensome extraordinary treatment.
- More information at National POLST Paradigm.
A do not resuscitate (DNR) order is another kind of advance directive. A DNR is a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. Unless given other instructions, hospital staff will try to help any patient whose heart has stopped or who has stopped breathing. You can use an advance directive form or tell your doctor that you don’t want to be resuscitated. Your doctor will put the DNR order in your medical chart. Doctors and hospitals in all states accept DNR orders. Generally, they require the signature of the doctor and patient (or patient’s surrogate), and they provide the patient with a visually distinct quick identification form, bracelet, or necklace that emergency medical services personnel can identify and comply with. These orders are especially important for terminally ill people living in the community who want only comfort care and no resuscitation if their heart or breathing stops.
The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. The Project offers a process to shift from not talking about dying to talking about it, enabling us to share the way we want to live at the end of our lives, to communicate about the kind of care we want and don’t want for ourselves. The Project provides a format for our discussion about our end of life wishes. More information HERE.