Posted on July 13, 2015 at 12:07 AM
There has been a lot of talk recently about end of life care and how people die in America as well as important recommendations made on how effective end of life care should be provided. But there is still much work to be done. Because the nature of this work cannot be resolved by more laboratory experimentation or investment in and mastery of technology, the kind of challenge presented to our healthcare system is actually more daunting, since it relates to how physicians’ communicate with their patients. The precise question I am raising with respect to the kind of end of life care patients receive at the end of their lives is this: Do physicians follow the golden rule? Do they give their patients the chance to have the same kind death they would want for themselves and for their families? Sadly, the answer is too often, no, they often do not follow the golden rule.
A recent study from Stanford University “found most physicians surveyed would choose a do-not-resuscitate or “no code” status for themselves if they were terminally ill even though they tend to pursue aggressive, life-prolonging treatment for patients facing the same prognosis.” At the same time, at 2013 JAMA study found that most seniors want to die at home or in the home of someone they know and avoid burdensome end of life treatments, yet only about 1 in 3, or less, actually do. In fact, about 1 in 3 people over 65 die still die in hospitals or ICU’s after having receiving aggressive, often burdensome, medical interventions. Of those that are moved to hospice care, 1 in 3 are there for less than three days before dying. So it’s safe to say that, though end of life care has improved for the past three decades, there are still many elderly people receiving overly aggressive, sometimes unwanted treatments, at the end of life. What are the barriers to elderly patients receiving the kind of end of life care they say they want? Let me go over two obvious ones.
The first is communication between the physician and patient. Physicians know very well, obviously much better than their patients, about the non-beneficial, burdensome, nature of much of end of life care. They know that the empirical data on cardiopulmonary resuscitation (CPR) is dismal—for elderly people who arrest with no one present, the success rate from CPR is virtually zero. And even when there is a success, there are many questions about success mean and what we are doing. Even if patients can be brought back from an arrest, they will almost always be intubated and taken to the ICU. Most will die in the ICU either on life supports or after extubation. Physicians know these data and many patients have a pretty good clue. But the barrier is having the candid conversation with the patient and taking the time to document what the patient’s wishes are and making sure a viable plan is in place to make sure they are followed. Some physicians engage their patients in such conversations artfully but many, probably most, do not. Physicians are generally not trained to have such conversations—in many instances, they have virtually no training. So they must learn on the job by trail and error—this situation is changing in medical education, but change is slow. Moreover, closely connected to having the communication skills, there is the basic issue of the physicians’ comfort level to talk candidly about dying with their patients. To speak of death can be viewed as an admission of failure of the physician to help the patient. So it is perceived to be easier for conversations to never take place.
The situation may be even direr for patients with advanced dementia. There is evidence that many physicians are not comfortable fully disclosing the diagnosis and likely disease trajectory to patients with mild to moderate dementia. So if conversations about the diagnosis of dementia are not taking place, then clearly patients are not being given the opportunity to express their wishes about advance directives regarding end of life care. This is a crucial issue for patients diagnosed with early dementia since there is a strong likelihood they will at some point lose capacity and be at the mercy of others to make decisions for them. In our present system, without expressly stated prior wishes or an appointed agent who is informed of the patient’s wishes, the default option is to treat aggressively. Clearly, patients with early dementia, as well as all other elderly patients, who have not had candid conversations about their preferences for end of life care are at considerable risk for receiving burdensome, non-beneficial treatments at the end of their lives.
The second barrier is communication between the physician and the patent’s spokesperson. This barrier to patients receiving the kind of treatments they desire at the end of life is created because their family member, the healthcare proxy or agent, who makes their decisions on their behalf when they lose decision making capacity is not emotionally able to follow the patient’s wishes. This is a whole area of study unto itself, especially in the ICU units. Family members are present at the bedside often stressed with anguish over the condition of their loved one. They are struggling to deal with their own emotional pain at the same time they also have to assume the role responsibility of the patient’s spokesperson. This means they have to be able to differentiate their own wishes for the patient’s care from what the patient has said he or she wanted—this is where decision making becomes entangled with the family member’s own emotional state of mind and it is too easy for the patient’s wishes to be overlooked and receive the very type of treatments they said they did not want. ICU caregivers in recent years have become more effective in dealing with decision making in such cases and helping family members to keep the focus on the patient’s wishes and values. But there are too many cases of family members not being informed explicitly by physicians of their loved one’s medical condition and specifically that the patient is terminal and that it’s time for the patient to have life prolonging treatment and be moved to comfort care only. Some physicians may continue with inappropriate, burdensome medical care too long because they perceive they are giving up on the patient, appearing weak, or putting themselves at risk for being sued. We should have no doubt, in cases where the patient is terminal or faces a future on permanent artificial life supports, and especially if there is explicit prior knowledge the patient’s wishes, physicians have an obligation to guide the family proxy’s decision making into compliance with what the patient would have wanted.
When physicians administer medical care that they wouldn’t want for themselves they run the risk of violating perhaps the most basic moral rule of all: the Golden Rule. When this happens, as we know it does at times, it is usually because the physician has not communicated fully or adequately with either the patient or the patient’s spokesperson. Perhaps it is time for medical educators and ethicists to start talking more about physicians’ obligation to follow the Golden Rule. If they did, more patients would receive the type of medical treatments they prefer at the end of life and die more peaceful deaths.
The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI’s online graduate programs, please visit our website.