Since the era of shamans and apothecaries, the practice of medicine has been concerned with enabling people to live longer, healthier, and more pain-free lives. In essence, it serves to make us feel more at home in our bodies. However, medicine has often played a less nurturing role when it comes time for people to leave their bodies. Death, the great American taboo, is an unfortunate reality that many physicians and patients alike are ill-equipped to deal with.
Due to advances in medical technology we are now able to extend life by an unprecedented amount. According to research conducted by World Bank, global life expectancy has increased by approximately 14 years since 1960. However, the percentage of people who now die in hospitals attached to ventilators or feeding tubes instead of peacefully in their homes has also increased. The medical practice is able to prolong death, but at what cost? Constant biomedical innovation, paired with a cultural fear of death, leads to a dangerous paradigm in which aggressive medical treatment has the potential to cause undue suffering.
The medical needs of someone approaching the end of their life are not the same as those of someone in an earlier stage of life. In many cases, technologies designed to prolong life for those with potential recovery are also used for those with limited days, often causing unnecessary pain for these patients. There are many medical technologies that were designed as temporary assistance that have now become last-resort therapies. One such example is artificial hydration and nutrition.
It is common for physicians and nurses to artificially provide hydration and nutrition to patients who are very sick or recovering from surgery. However, when someone with a life-limiting condition is no longer able to eat or drink, it is usually a sign that the body is beginning to stop functioning. Artificial nutrition and hydration cannot bring the person back to a healthy state, and can increase suffering in dying patients who no longer have the ability or desire to eat and drink on their own. In fact, artificial nutrition and hydration can add more discomfort, often causing symptoms such as shortness of breath, bloating, cramps, swelling and diarrhea. Oftentimes, people fail to remember that the person’s body is not beginning to shut down because of absence of food and liquid – rather, it is due to illness and the dying process.
In light of medicine’s proclivity towards artificially extending life, how can physicians ethically navigate these situations with patients? The answer lies within creating a culture of empathy since the practice of medicine has never simply been about diagnosis. Good medicine stems from interacting with and understanding one’s patient. Individuals at the end of their life must contemplate what is important to them in their limited time, and the role of the physician should be to provide expertise and compassion amidst fear and uncertainty. This means that although medical technology evolves rapidly, there is no obligation to use it or offer it.
The best way for doctors to improve conversations about the dying process is by honoring individual autonomy and implementing a thorough process of obtaining informed consent. Informed consent has three equally important components. First, the patient must be fully informed in language that is meaningful to them about all elements of the treatment option. This includes the benefits, the risks, and most importantly the alternatives. Second, the person must be able to fully understand and appreciate their treatment options, or in other words have capacity to consent. Lastly, the patient must be making a voluntary decision, that is, be fully free to accept or decline intervention, as a protection against unwanted touching. In a society where individuals assume responsibility for the way they live their lives, they must also be in a position to protect their own best interest as they end them.
“Dying well”, or the idea of experiencing a good death, is quickly gaining a fair amount of cultural capital. This has resulted in many individuals believing that planning for the end of life is at least as important as planning for any other stage of it. However, despite this increasingly popular ideology, a 2014 study conducted by The Pew Research Center revealed only thirty-seven percent of adults said they have given “a great deal of thought” to their end-of-life medical treatment. Thirty-five percent have given it little thought, and 27 percent have given it no thought. Furthermore, most people who are not having these conversations about end-of-life with their physicians are, “particularly younger, poorer, minority, and less-educated individuals,” indicating an underlying socioeconomic component to quality of care.
This disparity in end-of-life care can also be linked to the level of comfort physicians possess around engaging in end-of-life conversations. A review of US medical school surveys conducted by the Department of Medicine/Palliative Care at the University of Rochester Medical Center revealed varied and uneven approaches to the teaching of palliative care. Approaches ranged from weeks of palliative care training or hospice-based clinical rotations to a mere 2 hours in the classroom on end-of-life care. Similarly, a study conducted by Dr. Jessica Schmit at the University of Florida found 88.1% of residents reported little to no training on end-of-life care during residency, and that actual occurrences of end-of-life conversations were frequent but mostly unsupervised. Those who reported more classroom training on end-of-life skills also reported greater comfort in engaging in death-related conversations. However, most residents lacked proper training and comfort.
This discomfort surrounding necessary conversations about end-of-life care has tangible effects on the quality of care received. According to the Stanford School of Medicine Palliative Care division, approximately 80% of Americans would prefer to die at home, if possible. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home. A minority of dying patients use hospice care and even those patients are often referred to hospice only in the last 3-4 weeks of life. Despite the known benefits of early palliative care when treating terminal illness, there are many barriers to receiving adequate hospice referrals. Physicians who are more comfortable having end-of-life (EOL) conversations are more likely to refer to hospice in the best interest of their patient.
End-of-life care is a complicated practice that becomes even more difficult when patients are unable to advocate for themselves. In the absence of valid consent, doctors must defer to their patient’s designated surrogate. In the absence of a surrogate identified by a patient, the law provides an order of people who are used as proxy decision makers, with the most effective proxies being those who know the patient best. The role of a proxy is to say what a person would if they had the ability to speak for themselves. However, due to the nature of dying and the heavy emotional baggage it carries, feelings such as anxiety or guilt can result in proxies acting against the wishes of the dying. We see in many jurisdictions family members insisting on the overtreatment of their loved ones, not for the sake of the loved one, but so the family member won’t feel bad about not having done everything possible.
This overtreatment is an indignity to patients and a waste of resources. If patients preemptively communicate with their family members better, there would be less stress and conflict in moments of proxy decision making, removing the guilt that surrogates often feel for a person’s death. When there is uncertainty or conflict about whether or not a person would want the medical treatment, most often treatment is continued. According to the NIH, clinician-family communication is one of the most important factors driving family satisfaction in the ICU. By providing consistent information, emotional support, respect, and willingness to answer questions, physicians and nurses can largely alleviate family stress during the end of a patient’s life and advocate for treatment the patient would have wanted.
Medicine has reached a point where it must now distance itself from the paradigm of overtreatment. Physician’s must transcend their duties as diagnosticians and assume the role of guide and interpreter during a person’s last moments. By listening to and prioritizing the wishes patients have for themselves, doctors and nurses can overcome language, ethnic, cultural and religious barriers to provide critical empathy and assistance. Health care professionals must initiate realistic conversations about patient status and not recommend futile treatment due to fear of death. Through having these interactions with patients and their families, doctors and nurses can begin an important series of conversations that prepare people to pass with the dignity and respect they deserve.