Being Mortal: Rethinking Healthcare and End-of-Life Care by Atul Gawande – A Compelling Perspective on the Journey towards a Dignified Exit
Being Mortal is a book that every becoming-senior, young boomer, child of an older adult, and human contemplating the act of living should read. It has both a biographical easy read feel interwoven with important information about the United States for profit organization of the healthcare system. It's a personal account both from the lens of a child of an aging parent, and from the lens of a doctor trying to do his best while working within the system that the vast majority of people do not understand.
In this groundbreaking book, Atul Gawande explores the complex relationship between medicine and the realities of aging, respite care and death. While modern medicine has made remarkable advancements in managing childbirth, injury, and disease, it often falls short when it comes to addressing the inevitability of aging and death. Gawande draws on eye-opening research and poignant stories from his own experiences as a doctor to shed light on the suffering caused by this disparity.
One area that Gawande exposes is the struggle faced by nursing homes in balancing safety with residents' autonomy. These institutions place a heavy emphasis on ensuring the physical well-being of their residents, but sometimes at the cost of their emotional or personal needs. For instance, residents may be denied certain foods or choices simply because they are deemed unsafe. This clash between safety and personal freedom can lead to a loss of dignity for individuals who should have the right to make decisions about their own lives.
Another issue highlighted by Gawande is how doctors often avoid addressing patients' anxieties about death or hospice services, resorting instead to false hopes and futile treatments. The uncomfortable nature of discussing mortality can cause healthcare providers to shy away from engaging in these difficult conversations. As a result, patients may receive treatments that do more harm than good by prolonging suffering rather than having the important discussion of when to complete life naturally.
Doctor Atul Gawande addresses the emotional and financial ramifications when doctors and medical services do not engage in end of life discussions. A policy issue addressed are the insurance costs of keeping individuals alive in intensive care units and the profit made by offering costly medical interventions with little chance of quality health outcomes. With the help of palliative care specialist Susan Block, Dr. Gawande educates the reader how to hear the essential needs of an individual nearing end of life. The methodology appears to work regardless of cultural or socioeconomic background through listening and the time that must be given for the patient to speak. The questions, patience, silence, waiting, and listening is my main take away from this book. Policies and healthcare models such as bundling, do not create room for listening. There are no safeguards that keep a doctor from offering an expensive surgery that will not save or improve the patient’s life. The hospital itself may encourage the procedure to create income in a for-profit market. The bundled payment model of insurances incentivizes the doctor to perform surgeries by paying only for the procedure and never for the follow up conversations. The only individual to make a choice regarding life issues and care is the patient and they must be educated. Education takes time, listening and conversation. The healthcare system itself, and sometimes the medical professionals, are an obstacle to initiating end of life conversations or healthcare education conversations because it takes time to listen and time is money.
The problem of access to healthcare and hospice teams in the United States is already severe, with millions of Americans lacking adequate coverage. For-profit healthcare providers exacerbate this issue by not providing care for nonpaying patients. Although data from several states reveal that for-profit medical teams provide less uncompensated care compared to nonprofit organizations and hospitals, national data suggests minimal differences between the two types of institutions. However, both for-profits and nonprofits fall short in comparison to publicly owned hospitals. This indicates that for-profits are contributing to the problem of access by prioritizing profit over providing care to those who cannot afford it.
Another way in which for-profits worsen the issue of access to healthcare is through inadequate coverage plans. Approximately 20 million Americans have health insurance that does not meet reasonable standards of inpatient care in private hospitals, public hospitals, or any part of the health care sector. For-profit insurance companies often prioritize their profits over ensuring comprehensive coverage for their customers. This leads to exorbitant premiums, high deductibles, limited networks, and high out-of-pocket costs, making it challenging for individuals with these plans to access quality healthcare services. Therefore, the focus on maximizing profits within the for-profit sector exacerbates the problem of access by leaving millions of individuals with insufficient insurance coverage for most levels of health care.
As a memory life care director for elderly patients, I had a hospice care patient who was ready to die and refused food. Initially we continued to offer him sustenance and we were encouraged when he ate a bit of ice cream. To live was not his goal. It was not what he wanted. He was on hospice and already very thin. Days went by, he steadfastly refused food, I visited his room and held his hand and he passed away. In this same memory care of sixteen residents there were six without advanced directives. I reached out to a family whose mother was in her mid-nineties, wheelchair bound, very frail, with extreme anxiety, and due to her dementia she never knew where she was. I engaged in the difficult conversation of severe physical trauma that the body experiences when it is resuscitated and asked if that is what they wanted for her. After a brief family conference, a do not resuscitate (DNR) was put in place for all of my elderly residents. No one had discussed with this family how the resident might like to live, life wishes, and what end of life should look like.
Palliative care and hospice care are both types of end-of-life care that focus on providing comfort and support to individuals with serious illnesses. Palliative care is a form of medical care aimed at improving the quality of life for patients facing a serious illness or injury, regardless of their prognosis, available to individuals who find themselves intrenched in the hospital industry. It focuses on managing pain and other symptoms, as well as addressing emotional, psychosocial, and spiritual needs. Palliative care can be provided alongside curative treatments and is appropriate at any stage of an illness.
On the other hand, hospice care is a type of palliative care that specifically caters to individuals who have a terminal illness with a life expectancy of six months or less. Hospice care aims to enhance the patient's quality of life through symptom management while also offering emotional and spiritual support for both the patient and their loved ones. This type of care is generally provided in the comfort of one's own home, but it can also be offered in specialized facilities such as nursing homes or dedicated hospice centers.
Both palliative care and hospice care emphasize open communication between healthcare providers, patients, family members, and caregivers to ensure that end-of-life preferences are respected. By discussing these preferences in advance, individuals can increase the likelihood of receiving the quality of life choices that they intend to have.
Quality of Life (QOL) in healthcare and more specifically elder care is built around levels of care and Activities of Daily Living (ADLs). The architecture of ADLs are broken down into eating, bathing, dressing, toileting, transferring or walking and continence and do not include smiling, laughter, and number of hugs per day or initiation to include oneself in a creative program. The theft of our elder’s autonomy in Long Term Care (LTC) facilities and the attempt to replace autonomy with recreational programming for joy has never fit my moral compass. Most assisted living facilities (ALF) like Atria, operate without the employment of a licensed social worker and never engage in end of life conversations, or life decisions, like the one cited above. When someone passes it is considered an “out” or a room to be filled because ALFs are run by corporate real estate agencies who understand elder care as apartments to be kept at capacity. Geriatric Depression is such an extensive issue that there is a measure, the Geriatric Depression Scale (GDS) for LTC facilities, and further cultural competency research. The cited definition for happiness is a non-materialistic conceptual definition as clarified by researcher Kent Swift that meaning, purpose and creativity are essential elements for a good life; and Richins and Dawson’s 1992 Materialism Scale; Gratitude Scale GQ-6; BMPN measure of psychological needs; and SWLS life satisfaction scale.
The conversation of happiness is essential to life, has little to do with what we have and more to do with who with are with and how we spend our time. Some of the most enjoyable pages of Being Mortal included the story of Doctor Felix Silverstone and his move to Orchard Cove. In the story Dr. Silverstone acknowledges his bouts of geriatric depression and the fact that they were not debilitating. To combat the feelings, Dr. Silverstone engaged his autonomy by forming a reading group of retired physicians to discuss medical journals. In the past I offered ALFs a Transitions group therapy program to create significant relationships for referrals to our short-term rehabilitation. Through group cognitive behavioral therapy (CBT) seniors who feel victimized by LTC regain some of their autonomy. It should be noted that the end of life questioning presented in Being Mortal is less about action or CBT and more about listening which likens to Motivational Interviewing (MI).
To be placed in a passive modality, such as a LTC facility or an ALF, where there is no purpose and no action to be taken by the late-stage senior facilitates the decline of life skills. In one Transitions group session at an assisted living, a new resident reported the death of her husband, a subsequent fall that left her hospitalized with multiple broken bones, her children deciding she should not live alone anymore and in finality a placement. The woman was teary-eyed upon arrival to the group but progressed to anger and resentment at the lack of programming. I noted that the woman would probably need to address the quick succession of multiple traumas in one-to-one therapy and that she could also work with her cohort to create a life that they were interested in participating in. Multiple follow up emails regarding therapy for this woman were left unanswered because there are no federal or state regulations that govern ALF corporate entities. There is no incentive or reason other than fear of legal repercussions for an ALF to follow through on care. Each corporation has their own set of guidelines and quality assurances. If the industry continues to multiply at this rate, it is unethical for ALFs not to be overseen by a health organization like the Centers for Medicaid and Medicare. It is the lack of policy regarding ALFs that is dangerous and that ALF creator, Keren Brown Wilson, attempted to advocate for in Congress. Ms. Brown Wilson, much like myself, saw that the system has morphed from an alternative to skilled nursing to an out of control financial model.
To engage joy, one must live life on their own terms with autonomy. Having spent nearly seven years working in LTC most seniors that I have met all want to go home. In Being Mortal, Dr. Gawande shares the story of Harry Truman on Mount St. Helens who absolutely refused to leave his home and left this world on his own terms.
Life choices should be a part of the human life cycle and aim to empower families with life-affirming options. Moreover, education plays a vital role in empowering families. The aim should be not only to equip individuals and their families with accurate knowledge but also to help them explore all possible options so they can make choices that align with their values and beliefs. By offering non-judgmental guidance and creating a safe space for dialogue, our healthcare providers are taking small steps towards seeing death as a part of life and not a disease to be fixed with medical treatments and avoided.
