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End-of-Life Care: It’s Not Medical, It’s Personal

by Michael Fratkin, MD, palliative medicine

When we hear that we have a terrible illness that will shorten our life, it’s personal. 

When we learn about the benefits and trade-offs of the tests and procedures that will decide which treatments and medicines may help us, it’s personal.

As we make our way through side effects, complications, insurance plans, phone calls, waiting rooms, pharmacies, labs, radiology departments, billing departments, emergency rooms, intensive care units, medical jargon, bad news, good news, family conflict, family meetings, caregivers, nursing homes, physical therapy, occupational therapy, speech therapy, psychotherapy, medication lists, medication interactions, medication errors, advance directives, wills, and the many losses, it’s personal.

Pardon the extensive list above, but you get my point: When someone is dying, there’s an awful lot that gets in the way of the living that’s left. For many, this last chapter of life may be better centered in their homes and with their families. And care should respond to that very basic, understandable need.

People First, Not Technology

As a palliative care doctor, I have a commitment to not just easing someone’s physical pain, but to caring for that person in a way that’s meaningful to them. My goal is to provide care in a way that respects the people they are, that understands where and with whom they are the most comfortable.

For end-of-life care, what’s needed are providers who understand that people are not malfunctioning machines or exploitable consumers. All of us want to chart our own course on our own terms, getting the maximum benefit from medical technology. As physicians, we should empower that benefit, while helping our patients avoid the many pitfalls of our fragmented and complex healthcare system.

The Importance of Family and Community

It’s estimated that throughout human history, about 90 billion of us have made our way from birth to death. Until very recently in the developed world, the process of dying, like the process of birth, occurred in the arms of family and community.

In the absence of modern medical technology, families and communities offer a willingness to be present and a quiet courage that can help relieve suffering. In my experience, the caring, respect, and trust of their loved one’s dying process were, and are, sufficient. With the advance of technology today, we in the West treat death differently, and can often inflict, rather than relieve, suffering – despite providers’ best intentions and the spectacular advances of medical technology.  

As we search the world for opportunities to make an impact and relieve suffering with intelligent, disruptive approaches, let’s consider that the necessary wisdom may be right under our noses – stored like DNA in long-held forms and traditions of family and community.

Perhaps, people know what they need. By giving a little space, a lot of respect, and a balanced view of the limitations of modern medical technology, people always find their way to the right path for themselves. Their choices are the right path, by definition!

Perhaps, as we lament the costs of modern healthcare, we can invest in the well-being of the whole human family by offering the time and space people need to understand and plot their own way.

The Future of Care

The economics of delivering healthcare to those with serious illness are changing fast. As a society, we are realizing that “more” is not better. Across the country, programs are being funded that provide care to people in their homes. And the success of that disruptive approach is measured by the value and satisfaction defined by the person receiving care, not by the number of encounters or procedures that can be billed.

That’s a very hopeful sign for the future of care – regardless of where each of us is in our lives. 

Dr. Michael Fratkin is an athenahealth client, palliative medicine physician, and founder of ResolutionCare, a company using in-home visits and telehealth to bring kindness and respect to people facing serious illness and the completion of their lives, as well as to share knowledge that brings skills and wisdom to caregivers.

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