It is time for the public to speak up about their end of life wishes, but it is also time for the health care system to be ready for collaborative decisions when it matters most. If you are among the 20-30% of people who have completed an Advance Health Care Directive, chances are you made a choice about whether you would want to have CPR if your heart suddenly stopped (“cardiac arrest”). In fact, legal Advance Health Care Directives in all 50 states ask that question of all persons completing the document. Someone who chooses not to have CPR during cardiac arrest is said to be “DNR” or Do Not Resuscitate. Living Wills, prepared by attorneys, may offer more instructions about the types of care someone wishes to receive, but they are not consistently recognized or available in the medical setting.
Making decisions about specific treatments at the end of one’s life is a complex, emotional issue for those with no expert knowledge of the risks or efficacy of CPR or other interventions performed in an emergency.
For example, how many people realize their chance of surviving CPR outside the hospital is a minuscule six per cent? As most people do not die of sudden cardiac arrest, is DNR even relevant? Focusing the Advance Directive or Living Will on a person’s personal goals, values and fears would be a first step in allowing medical professionals to use their training and experience to honor a patient’s wishes.
Here’s an example of the limitations of DNR: Say your father, in his eighties, and in fragile health, but still mentally alert, is rushed to an ER when he becomes confused. On arrival, the nurse notes that his blood pressure is extremely low. When the doctors review his records, they find that he decided on his 80th birthday that he didn’t want “extraordinary measures” taken to extend his life if the chances of success were slim. He updated his Directive to say DNR. Now he is in and out of consciousness, so the medical team asks you what they should do given his expressed wishes. “Should we resuscitate him?” they ask. “No, he is Do Not Resuscitate” you reply. After a heated discussion, you overhear the medical team (who have never met your father before) argue about what should or should not be done. You volunteer that he does not want extraordinary measures, such as CPR, but he really wants to live to attend his grandson’s Little League game next week. The nurses start an IV to give him fluids, explaining that this is within the scope of care he would approve for himself. Within 20 minutes of receiving IV fluids and antibiotics, your father becomes more alert. Within an hour, you are conversing with him about the upcoming Little League Championship. After such simple and relatively “non-invasive” interventions, your father has been returned to his normal state of health. Modern medicine has done its job.
Unfortunately, the more familiar scenario goes something like this: A neighbor of yours who is quite elderly, but still living alone, stumbles and falls outside your home. You call 911. Her Directive says DNR, but at the hospital, they find she’s suffered a major stroke, not cardiac arrest. As time is of the essence in stroke therapy, her daughter gives consent to a surgery to remove a brain blood clot. The treating neurologist assures her that this procedure does not go against her wish to be DNR. By the time her daughter arrives, she is in intensive care, but the operation has not been a complete success. While her life was saved, it is not very likely that she will be able to live independently again. Her daughter tells the medical team, “She never would have wanted to live if she was going to have to go to a nursing home!” Needless to say, some important communication was missed, not addressed by a simple DNR.
Some of this miscommunication has been addressed by the advent of the Physician Order for Life Sustaining Treatment, (POLST). Patients or their families who complete the form (which is signed by a physician) specify the exact treatments they’ll accept or reject. It has helped many aged or terminal patients avoid unnecessary and unwanted treatment both in and out of the hospital. Completing a POLST form is supposed to encourage a dialogue of wishes and choices for emergency interventions, but it is not perfect. It remains focused on what should be done and not why.
In my experience helping people think about communicating their wishes, I found 3 areas of discussion very helpful. First, I asked, ” What do you want to be able to do until the day you die?” This is sometimes referred to as the “minimum baseline quality of life.” The answer may change over time as people accept new infirmities as they age, but most of those I’ve encountered wish to be able communicate meaningfully with loved ones until the end.
Second, I asked “What gives life meaning for you?” Some might answer: “Spending time in my garden” or “Continuing my life-long learning through reading” These can be strong hints at what should be prioritized when making a critical medical decision, and a guide for surrogate decision-makers about the person’s overall philosophy of life.
I often refer to the third question as THE MONEY QUESTION. “What experiences have you had with others who had serious illness or have died?”. The answer usually includes the strongest and clearest sentiments about what people would want to avoid for themselves.
In fact, there’s a growing body of research showing that those who place some limits on the type of interventions they wish to receive, actually do better than those who want physicians to try ALL life saving possibilities. Refusing CPR, ventilator support, chemotherapy and most surgeries at later stages of most diseases may protect people from the risks or undesirable side effects associated with each. With foresight, clear directions, such as are provided in POLST forms can be crucial.
To be sure, no one outcome or goal can be guaranteed, but if doctors and health care systems are held to the standard of honoring their patients priorities, goals and fears, we may finally be able to convert the dialogue from “Would you like us to perform CPR in the event of cardiac arrest?” to “What’s most important to you (or your loved one) right now? Or “ What outcome would be unacceptable to you?” At the same time, patients or their surrogates need to be prepared to ask medical teams how each proposed course of treatment will help them reach their goals, or might put them at risk for an unwanted outcome.
These are not easy discussions, but the growing field of Palliative Care is providing an example of how to do it well. However, its also increasingly clear that physicians in all specialties (especially primary care) need to learn and practice how to help their patients understand where they are in the curve of their life span and to develop priorities for the time left.
Remaking the legal Advance Health Care Directive to include statements about personal goals, values, and fears is the best way to honor patient autonomy. At that confusing, emotional and often painful time when timely decisions have to be made, patients, their families and the medical team need a common agreement on the desired outcome. A former patient of mine, who had just been diagnosed with Parkinson’s Disease told me that his greatest fear was ending up like his father, who also had Parkinson’s. He recalled the last year of his father’s life in and out of hospitals, and had not yet forgiven his sister for putting their father on a ventilator in the ICU during his last days. I transcribed that verbatim in his Directive and reflected: “This is much more valuable than a DNR”.
Increased survival with limits on care: