‘Being Mortal, Medicine and What Matters Most in the End’, by Dr. Atul Gawande is a must read for caregivers and families alike. Gawande begins with the assertion that ‘for a clinician, nothing is more threatening to who you think you are than a patient with a problem you cannot solve.’ He further shows us that for more than half a century we have treated sickness, aging and mortality, much too narrowly as medical concerns. The focus of medicine should now include not only the repair of health but also the care of the soul and the emotional and spiritual well-being of the patient.
The failure to accept the limitations of medicine in effectively dealing with aging, frailty, life threatening disease, even death itself, Gawande tells us, has resulted in unintended, negative consequences for patients and families alike.
“The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a slivers chance of benefit. They are spent in institutions – nursing homes and intensive care units – where regimented anonymous routines cut us off from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they need most. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by medicine, technology and strangers.”
The progress of medical care and public health continues and as such people we’ll get to live longer, healthier, more productive lives than ever before. As we age, we all we’ll need help, often for long periods of time. There is a tremendous need to expand the scope of care to included what matters most to people, especially as they near the end of their lives.
Gawande highlights positive, inspiring examples of leadership by people committed to effectively and compassionately managing end of life conversations and treatment. “We have entered into an era in which more institutions and the professionals that run them believe that the job is not to confine peoples choices, in the name of safety but to expand them in the name of living a worthwhile life.”
Eldercare Advocacy Groups such ARGENTUM (Assisted Living Association), The Pioneer Network and National Association of Home Care and Hospice are more or less adopting and implementing principles, programs and practices designed to transform clinical care into an experience in which a person can feel a sense of autonomy and at home, “is to support the quality of life….meaning two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world.
Indeed, there is a much greater understanding and effort to accommodate a persons need for both privacy and community, to offer favorite foods, the companionship of pets, flexible daily rhythms and patterns, palliative care, and the possibility of forming caring relationships.
When it comes to end of life conversations, treatment, and decision making, there will always be more work to do. ‘Being Mortal’ is a beautifully written account that serves as a tremendous resource for caregivers and families alike; illuminating the need for self-reflection, and the institutional and cultural transformation required to fully and completely for those being cared for.
Indeed, according to Gawande, “the job of medicine is to enable well-being, the reasons one wishes to be alive. The reasons matter not just at the end of life…but all along the way.”