Like McCain, we all must consider our mortality

John McCain has not announced a decision to stop treatment for his brain tumor, but his public actions indicate that he has transitioned from “being sick” and hoping for a cure, to “dying” and hoping for the best possible quality of life in the time remaining. He has completed a book, “The Restless Wave.” He has planned his funeral and asked people to eulogize him. He is openly gathering friends and colleagues to his ranch to say goodbye, share memories, and pass on wisdom.

And when he does die, especially coming so soon after Barbara Bush openly stopping treatment in favor of comfort care, there will be a rare opportunity for us, as a society and as individuals, to benefit from the experiences of these courageous public figures and contribute to a growing national dialogue about how we die.

We have not come to terms with dying as a natural part of living. The technological capabilities of medicine have outstripped the moral capacity to distinguish what can be done versus what should be done. This results in end-oflife care that is often aggressive, expensive and not aligned with patient preferences. Far too many of us die in hospitals, in pain, isolated from their friends and families.

Consider:

Although 90% of those on Medicare say they want end-of-life care at home, only one-third achieve it.

Twenty-five percent of all Medicare spending is for patients who are in their final year of life, most of that money spent in their last couple of months for care, which is often of little apparent benefit.

The default standard of care is “all necessary care.” This standard of heightened levels of care contributes to the estimated $810 billion in unnecessary, unbeneficial, or wasteful care provided to Medicare beneficiaries who spend most of their Medicare dollars in the last year of life.

Despite overwhelming conformity when it comes to what Americans claim is important to them at the end of their life, patients do not always receive the level of care they desire. Among those seniors who have taken the time to spell out for their physicians how they envision their final days, only 2% of respondents requested “all possible care.”

A study of patients who understood themselves to be terminally ill with advanced cancers found that only 17% of respondents expressed interest in “life-extending treatment.” Instead,

most patients valued quality of life over extending it.

There are institutional changes required to improve end-of-life care, i.e., restructuring the U.S. payment system and policies to support palliative care provision and updating medical school curriculum to educate clinicians about end-of-life care. These are necessary components of a long-term solution but institutions are slow to change.

In the meantime, there are personal barriers to dying well, largely fueled by fear and lack of information, which can be addressed now. Failure to plan ahead makes it difficult, if not impossible, to achieve end-of-life goals. There are tools available to help us think through and document what we want at end-oflife. There are excellent books that educate readers about the process of dying, palliative treatments that are available and the many services that hospice provides.

Healthcare organizations at all levels should commit to investing as much on campaigns targeted at improving communication about advanced care planning and increasing public information/ participation in end-of-life care as they do for campaigns on healthy eating, exercise and screenings.

Without action, many of us will never achieve the closure that John McCain is surely working towards, and grieving family members will be left with heartwrenching tales full of tears, anger, regret and loneliness.

Susan Ducharme Hoben is the author of the memoir “Dying Well: Our Journey of Love and Loss.” (SusanDucharmeHoben.com)