OUR BLOG: A MEDICAL HUMANIST'S NOTES

Quality of Life – We All Want It But What Is It?

September 26, 2018 at 9:45 am · filed under communication, family & friends, Newly Diagnosed, Patients

In Man’s Search for Meaning Victor Frankl said, “The quest for meaning is central to the human condition, and we are brought in touch with a sense of meaning when we reflect on that which we have created, loved, believed in or left as a legacy.” 

On August 30 the Center for Communication in Medicine (CCM) presented another in the series of SpeakSooner community education programs titled Re-defining Quality of Life: Living Fully with Illness, Disability and Aging at Equinox Village in Manchester, VT. The program explored the complicated issues surrounding quality of life concerns when facing the effects of illness, disabilities and aging.

As best as I can I’d like to bring you into the room—introduce you to CCM’s community work and to those who generously shared their experiences both personally and professionally, for which we are grateful.

CCM founder Dr. Bernard Bandman began the program by identifying factors that can influence quality of life such as physical health, psychological well being, independence, family support, financial security, spiritual beliefs and support services. He then presented a video clip from CCM’s “Voices From The Lived World of Illness,” in which several cancer patients talked about quality of life adjustments. He then introduced the panel.

The panel included: Pat Musick, an artist diagnosed with macular degeneration; her husband Jerry Carr, a former astronaut who has become his wife’s studio assistant; Dr. Allen Hutcheson, a palliative care physician; Sarah Sigsbury, home health care nurse; and myself, a medical humanist.

Dr. Bandman moderated the panel discussion.

Dr. Bandman began by asking Pat, “Tell us about your health condition and how it has influenced your quality of life. What have you done to adjust?”

Pat was quick to say, “in a word, its communication!” She talked about telling her husband that she needed his help more than ever in fulfilling her artistic visions, especially large sculptures. Pat emphasized the importance of being honest with family. She needed her children, grandchildren and great grandchildren to understand that her eyesight was failing and would need their help. And, she offered an example by saying there would be a time when she may not be able to recognize them. And, it would be helpful if they told her who they are. For her part, Pat asked doctors and investigated resources to learn about what aides were available to enhance her sight.

With an affectionate smile towards his wife, Jerry talked about liking his role as her studio assistant, noting he’s an engineer and can help build large structures. He also talked about preparing for visits with doctors by writing down their list of questions. In fact, he had a pen and pad in hand taking notes throughout the discussion. When asked about a tip for those in the role of caregiver, Jerry emphasized the importance of “listening so you can understand their definition of quality of life.”

Dr. Allen Hutcheson noted the importance of educating patients and families about the role of palliative care and its mission to improve quality of life for all patients. He addressed the mistaken belief that palliative care is only available for end of life care. Dr. Hutcheson described himself as someone who asks many questions, perhaps too many. He’s found that he can get on the nerves of some patients. That got a laugh.

Sarah Sigsbury, a nurse who visits those who are home bound, underscored the need to “listen to what the patient wants—not what healthcare providers think they should want.”  She gave an example of a woman who’s definition of quality of life included cleaning her home, which she accomplished by rigging an extension to her mop handle. This task made her feel worthwhile.

As for my remarks—I summarized much of what the panel said. I noted, “Only we can define the meaning of quality of life. But sometimes we need some guidance and encouragement.”  Dr. Bandman added, “The Difficult Conversations Toolkit was designed to help patients and caregivers think about issues and concerns that can influence healthcare decisions and quality of life considerations.”

There were numerous questions at the Q&A about quality of life concerns and challenges of navigating the healthcare system. Nobody seemed in a hurry to leave. I think this says something about an interest in this subject, especially when facing issues with illness, disability and aging.

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