Impossible Cases
“What gives my life purpose and meaning?” “What is important for others to know about the spiritual or religious part of my life?” Jolting questions from an Advance Directives Toolkit focused on preparing for the most permanent of human acts, dying.
For hospice and palliative care, living is more important than death, and seeing to it that suffering is minimized summarizes this philosophy of care. Such considerations are more salient to the human condition as incidences of dying after a long illness is increasing.
Advances in medicine have extended life expectancy, increasing the chances that these kinds of questions are going to become more important to healthcare and patients. Yet, medicine doesn’t like talking about what they consider, “failure”. And people don’t like the idea of, “giving up”. However, these denial tactics fail in altering the reality of the inevitable. By having these conversations, an unexpected sense of ease falls upon everyone affected, including physician, patient, and families. That was the main take away from a recent public screening of “Being Mortal”, hosted by Nathan Adelson Hospice at UNLV.
“You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until you die.”
— Dame Cecily Saunders
“I don’t ever want to be like that…”
It is inescapable, all people will face death. Their own, loved ones, and anyone and everyone. For most people, suffering in the form of incapacity, immobility, and pain are the most pressing fears of terminal illness. Yet, it’s nearly impossible to talk about.
For physicians, non-curable disease is uncomfortably outside of the realm of medical training and social expectations. Physicians are honed on preserving life, staving off disease, and at almost all costs. Patients, simply, want to avoid pain. Caught in the middle are the often powerless loved ones and caregivers.
As caregivers, there may be nothing more difficult than watching another deteriorate into disconnection from this world, into a failing body, that finally is released with their last breath. Many recognize that transition as peaceful… when it is over. But in instances where there remain unresolved practical issues like resentments, guilt, remorse, then a loved one’s death could be the thing that shreds a family and imposes doubt in a component provider.
More often individuals have preferences for their funerals assuming that death will occur suddenly rather than result from a gradual deterioration spanning years. This is why an internal conversation among individuals, families, and providers, is essential in ensuring that wishes are expressed and honored so one’s death may be as peaceful as possible. The how’s and whys of this conversation were explored at the recent screening of “Being Mortal”, the PBS Frontline documentary inspired by the book of the same name hosted by Nathan Adelson Hospice at UNLV’s Greenspun Hall.
An age diverse audience filled the public screening room as Carole Fisher, President and CEO of Nathan Adelson Hospice introduced the film. To follow was a panel discussion convened featuring local experts in hospice and palliative care.
“Today I’m the son, not the surgeon”.
As the lights dimmed, Dr. Atul Gawande, author of the book, “Being Mortal”, introduced himself and would serve as narrator for the hour long exploration into the social stigma and inadequate skills of physicians in discussing non-curative care for terminally ill patients.
Redolent of the urgency of the topic, the film wasted no time easing into the subject. Rather, the weight of the topic fell upon the audience like bags of sand diverting flood waters. Within minutes we’re introduced to a neuro-oncologist, palliative care specialist, and their terminally ill patients. The particulars of these cases illustrated practical moments highlighting the tension between medicine, and its compulsion to cure, and patients, where they physician’s compulsion will not be satisfied. Gawande, though, aptly traverses the dual roles as both surgeon and son of another surgeon who died of a complex spinal cancer.
Gawande draws from his professional and personal experience to frame the nuances of end of life discussion from the physician’s perspective as well as patients. As the stories unfolded, and ironically, there was a lack of resolution for the real topic elucidating that death is not the point, how to die is the morally ambiguous conundrum. Central to this conundrum is the ethical principle of autonomy.
Autonomy: End of Life Care
Autonomy in bioethics and medicine is expressed as the patient’s right to self-determination unfettered by external factors. It is also an essential component of determining informed consent. While physicians are aware of this concept and actively work to respect their patient’s wishes, they are skittish about discussing end of life care, hospice, or palliative care.
Non-Curative Care: Physician duty to heal.
Physician reluctance to consider non-curative care stems from their professional identity as soldiers in a battle staving off death. In impossible cases, their core training is frustrated because there is nothing they can, “do”, for their patient. Habituated toward interventions like surgery and prescriptions, doing nothing is anathema to medicines purpose as understood by physicians and considered, “failure”.
Reasonably so, patients rely on physicians to represent the capabilities of medicine in all cases all of the time. Even in Gawande’s experience, he consciously disconnected his physician reasoning and fully engaged being the adult son of a dying patient. He noted how awkward discussing his father’s case was even among, “Three doctors in the family”. He equated their approach to seeing medical problems as carpenters looking at a house. Of course they want to fix the house.
Advanced Medicine Increase Need for End of Life Care
As noted during the panel discussion though, advances in medicine have prolonged life significantly and the consequence is that more people will die from complex and drawn out illnesses than ever before. These incidences will increase into the future and include well advanced age. Concordantly, the time is now for physicians to expand their understanding of the value and quality of life and health for their patients, from the patient’s perspective.
Health is the objective
Health as a notion is casually arrived at, people assume they can see health by looking at it. But health is an experience appreciable to the individual and in some way observable to others. It is what people naturally do when they are not sick. Un-health, then is the true opposite, and may manifest itself whether disease is present or not. Health is also a base condition to which a life is lived.
Physicians may resign themselves to the idea that tending exclusively to the preservation of functioning biological systems is sufficient as mechanics in medicine. This is their primary charge, but that is too easy. Of course a classic car may be restored, but it may be on blocks in the yard for two years during the process. Put another way, If amputation will save the life but the patient cannot imagine a life without the limb, the choice has been made, autonomy is expressed and as hard as it may be to accept, accept it we must. Because if autonomy is not respected the system fails to achieve its desired ends: Health.
Patients deserve the truth.
Although the idea of should a patient be treated rests largely with the patient as part of their autonomous rights, they cannot make valid decisions without an earnest representation of medicine’s abilities (veracity). Physicians are the gatekeepers to the powers of medicine and although, theoretically, a body may be maintained almost indefinitely, in those extreme cases, its validly debated that this patient is, “alive”. To this point, physicians must not only advise their patients of the capabilities of medicine but also honestly value the intervention for the patient.
Throughout the film, physicians were paternalistically minimizing test results, or directing attention toward some sort of vestment into the agony of the treatment with uncertain or dire outcomes. This underscored the discomfort of medicine to accept death as natural instead of an “academic” or professional “failure”. This notion is partially valid because the public generally expects their physicians to vigorously defend life over living in defiance of death. It is difficult for physicians to discern when it might be appropriate to consult the patient on end of life care. And to this point, patients, families, and communities must allow for the discussion to occur.
Who should start this conversation?
“When and who should initiate the conversation about end of life care, hospice, and palliative care?”, became the main point of discussion among the panel. Also, the value of written wishes, designating and authorizing a trusted person who understands those wishes to advocate, and the requisite skill to recognize when the end of life is happening as it can be terrifying.
Experience
Many in the audience had personal experiences with hospice and palliative care which drove the conversation around the barriers to discussing its usefulness and the timing of the discussion.
“Sooner is always better”, was echoed by panelists and audience members. But there was still resistance because medicine’s main concern is that patients will not complete treatments that are in the long term life extending because of the horrendous side effects in the meantime. This is an intermediate good, where the ultimate aim of an activity is good, but the process to get there is painful. An simpler example is the physical soreness of surgery, it is a tough recovery, but the outcome is “worth” it.
Dynamic change
It was abundantly clear, both in the film and the panel discussion, that the trajectory of deterioration is anything but linear, textbook, or predictable. Individuals are more often to prepare for their funerals without regarding the experience to get there. Suffering was the biggest concern for the sick, tending to the final time was also draining on the caregivers.
An illnesses progression will present confusing challenges to the patient and care team because some procedures, while non-curative, will relieve some suffering. Even if a group of decisions has been made, the factors supporting those decisions will change, and they will need to be made again and again and again. Meanwhile the primary source of authority on autonomy is deteriorating. This is why a trusted friend is the most effective advocate in ensuring that wishes are carried out.
Dr. Gawande recounted a conversation with his father about treatment options. What surprised the son was the fathers discussion on acceptable levels of physical impairment. He considered anything that might leave him a quadriplegic unacceptable. This framed the sense that dignity and health is expressed by capacity to do or be in a certain way. This is a patient’s quality of life and should be a guiding principle for care planning.
Listening Openly
Patients are the best source of what they want. It is not necessary for the patient to understand every technical detail of the proposed treatment, but essential that they understand the effect. This is where physicians and patients may speak a common language. The patient must understand how they want to be under the circumstances, articulating a relative principle for guiding their care. Then they must empower another to see to that principles adherence. To wit, from “Deciding Tomorrow”; “ [On your last day] what would I eat if I could eat?” — What do you mean IF? I won’t be able to eat? This question evokes the patients understanding of the likely course of the disease.
Proxy can make all the difference
Designating a proxy with Power of Attorney is essential to ensuring that a patient’s wishes are carried out throughout the very end of the course of their life. It was noted that many terminally ill patients ending their lives at home are rushed into the Emergency Department because the home caregivers panicked. Dying is not always a peaceful experience, it can be very difficult to watch. This must be assessed by the care team. Not everyone is the right person, and the most important way of knowing that is by talking about that honestly and openly beforehand.
Deciding tomorrow today…
Each audience member was given an advance directives tool kit titled, “Deciding Tomorrow…today”, with practical guidance for exploring; first, what one would want for themselves, then having the discussion with a trusted friend, documenting these wishes and sharing them with care providers. For all concerned, the recommendation was to have this discussion earlier rather than later, documenting wishes, and please not being afraid.
Navigating the discussion packet reveals core beliefs about life, spirituality, and the capacity of those loved and trusted. Although the topic is a little dark, the light comes from removing any ambiguity, and strengthening resolve with loved ones. It does have the impact of inspiring a sense of gratitude and engagement in the life of today.
Advanced Directives and Powers of Attorney may be modified from time to time It is best for everyone to have one in place in the event of an emergency (like an accident or major trauma).
Its important to note, thought, that life changes, even in terminal disease. As time passes the qualities of lives change. A principled foundation known to others is more adaptable and enforceable. The toolkit elucidates core principles that can be adapted as the situations change.
So that they may live well
Nevada benefits from organizations like Nathan Adelson Hospice. For thirty years, they have kept to their mission, and no one has been turned away. Leading advances in the field, they incorporated a palliative care fellowship into their offerings training new generation physicians in this philosophy of care.
Courage
Through their leadership, dignity in death ignites sparks in life. De-stigmatizing the conversation through community events like this screening and panel discussion advances the courage of medicine to be fully honest and advance care as well as cure. Patients and their loved ones may show their courage by having these discussions, and knowing themselves better. This may not be the best holiday party conversation, but raising the topic will plant a seed that may bloom in the coming new year.
Consider being grateful of the amazing people who meld science and compassion into the healing arts. And for all those who have that special capacity to help people in tough times.
And for New Years, may a resolution include owning the human right to health by enshrining and End of Life plan for ourselves and the ones we love.