Death Talks: Palliative Care is a Human Right

We are all going to die. It is inevitable and we know it! As healthcare providers, we come face to face with our mortality on a regular basis. It is honestly one of the hardest parts of the job for me. </p> <p>But, when confronted with such darkness, we do what humans do and we joke about it… like, <em>a lot</em>. Late nights and slow afternoons in the residents' room, I have often joined in on unique and quirky conversations about death. Each person adding their own self-reflection. Going around the room as we have a dark and hilarious discussion about how we'd like to leave this world if faced with a terminal illness and poor prognosis. </p> <p>">"You know I had a Pulm-Crit attending say he'd rather just take his chances in the wilderness with a bear than stay hooked up to a ventilator for his final days," another responded.

It's weird how something that is terrifying and rare for most people, ends up being a benign and almost muted event for those in healthcare. With the most recent data showing that about one-third of Americans die in an inpatient setting, it is easy to see that we've been forcibly conditioned to deal with death and dying. We've seen "good deaths" and "horrible deaths." It comes for patients we cared for a long time just as easily as it comes for those we've just met. Tangled in with grief and guilt is a feeling of acceptance that eventually comes. And all these deaths have colored us so much that we sit around having melancholy and morbid conversations with an air of gaiety.

If a normal person would have walked in the room that afternoon, I'm sure they would have thought we were all suicidal or callous. But since these discussions are commonplace and our interactions with death and dying are so regular, we often find ourselves talking to each other easily and openly about our mortality. And light-hearted conversations turn into somber and deeply personal discussions about our own advance directives.

Standing in stark contrast is the fact that healthcare providers find it difficult to engage in these discussions with our patients. Less than one-third of Americans have a living will, despite the U.S. having a higher mortality rate than most developed countries. Ultimately, death and dying is a taboo conversation among the general population. But for refugees, disenfranchised citizens, and people living in poverty, their exposure to death and experiences with the darkness it brings is more readily apprehensible. So, maybe their view of the world is through of pair of slightly tinted lenses compared to most. And while we use opportunities like Death Cafes to help make conversations about death and dying more palatable, we need to find a better, more culturally appropriate way to discuss death and dying to the people who are experiencing it more.

Understandably, not everyone has the foresight to plan out how they'd prefer to deal with the intricate decisions that need to be made when you start loosening your grip on the world. Dying with dignity is a difficult topic, regardless of age or prognosis. Not just as it relates to discussions about physician-assisted suicide, but primarily when talking about planning how you or a loved one would like to spend their last moments on earth. The who, where, and how questions quickly become invasive and overwhelming. Because of our regular interactions with mortality and the extremely morbid situations we witness, healthcare providers usually have a good idea of what they want for themselves in the face of chronic, progressive, and life-threatening illness. But that doesn't often translate to how well we communicate or even identify and initiate conversations with patients about end-of-life care.

But that's where medicine as science marvels. We have a multitude of resources for end-of-life training. As clinicians and other care providers, it seems easy to understand the inherently compassionate and moral necessity of having conversations about goals of care, training anyone interested in guiding end-of-life discussion, and accessing palliative therapies and resources. However, for patients, their caregivers, and loved ones, these types of conversations are not regularly occurring. But with articles like this one by a pair of physicians at the Mayo Clinic or this one by Canadian Researchers at the Life Network (CARENET), clinicians have tools readily available to help their patients navigate the difficult process of advance care planning.

But standing at the helm, guiding the ship through these rough waters are Palliative Care providers. They provide opportunities for patients to have access to people who know the best way to have conversations to address the various intricacies of end-of-life issues.

Despite these readily available resources and an entire specialty dedicated to goals of care and end-of-life issues, there is still a major gap amongst those who need Palliative Care and those who receive it. For a long time, we have known there is a clearly defined line separating the haves and the have-nots. It applies to education, socioeconomic status, and various aspects of health. And the dying are not immune to this. Yes, there's even a gap between the rich and the dead. Unsurprisingly, patients that are members of disempowered or marginalized groups (refugees, prisoners, or homeless) and those living in poverty are the ones that drew the short end of the stick.

Lower socioeconomic status in the U.S. translates to dying earlier, suffering from more diseases, and suffering a worse outcome from those disease. And despite the advances in healthcare and modern medicine, this gap continues to persist. It results in people of a lower socioeconomic status receiving more aggressive end-of-life care and less utilization of advanced care planning. Higher ER visits, unnecessary ICU Admission, emotionally scarring inpatient deaths, and the inappropriate use of prognostically mute therapies are not only financially expensive, but also morally taxing. Because of a lack of implementation, education, and policies to support Palliative Care practices, patients, and families of socially and economically marginalized groups end up suffering unnecessarily at the end of their life.

Globally, the World Health Organization recognized that in the year 2011, 20.4 million people died from diseases that would have benefited from receiving Palliative Care. Think of the anxiety and depression sparked by witnessing the agonizing loss of a friend or family member. Or the distrust and outrage evoked in the heart of a spouse or child who stands at the bedside seeing their partner and parent suffering through their death. And, most tragic of all, the despair in the eyes of a patient struggling to balance between what's best for them and what their family wants. Be enraged at the lack of resources and lack of education our patients receive when it comes to advanced directives and end-of-life care.

The palliative gap between the rich and the dying exists because of a multitude of issues, but we must own our part in it. Whether you're an inpatient or outpatient provider, we share the responsibility of having this conversation early in the disease progression. Doing so will ultimately affect the quality of the last moments of our patients lives hopefully for the better.

Every patient, regardless of socioeconomic background and independent of legal status or racial identity is worthy of a good death. So, all providers have a moral obligation to improve our patients' ability to access Palliative Care services. And although death is never a comfortable conversation topic, it is necessary for nurses, social workers, physicians, and everyone involved in the care of patients to overcome our uneasiness in order to lead, promote, and encourage conversations about end-of-life care. Identifying a patient's wishes, guiding deliberate and informative care discussions, and truthfully relating prognosis and expected outcomes of treatment options are holistic practices innate to Palliative Care that are so sincerely necessary and beneficial to the care of patients.

When disease is no longer curable or life has met its inevitable overture, we must find the courage to be ready to explore a patient's fears, discuss options of care, and review effective and responsive symptom management. It won't happen until you ask. So, what will it be: bear or ocean?

Dr. Chioma Udemgba is a third-year Med-Peds resident physician currently training at Tulane University in New Orleans, LA. She is passionate about creative writing, graduate medical education, and working with underserved populations.

Dr. Udemgba is a 2018–2019 Doximity Author.

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