Engaging Physicians in End of Life Conversations
Image* by Vic: Doctor greeting patient
The traditional Western medical model places emphasis on prolonging life. Historically Western physicians view a patient’s death as defeat. They often advocate treatments that fight the disease process, and bypass those that could increase quality of life near the end.
There is nothing wrong with opting for curative treatments. But increasing awareness around end of life issues will help society see the value in achieving quality of life as well as quantity. Myrna’s true story illustrates the impact of a physician who engaged with a patient around end of life care.
End of life choices
Myrna Levine’s faith and courage exemplify ways that the human spirit transcends adversity. On initial diagnosis and treatment, she lost her hair because of chemotherapy treatments. Despite extreme sickness, Myrna never doubted her ability to fight cancer. For the next seven years, she successfully regained her quality of life.
Eventually Myrna’s oncologist informed her that the cancer was spreading. She would have to resume chemotherapy with little promise of an extended quality of life. With the support of her oncologist, Myrna made the decision to live life to its fullest without chemotherapy. She filled her remaining days with love and thanksgiving for family and friends, seeing every moment of physicality as a precious gift.
Myrna made end of life preparations, planned her memorial service, and expressed her wish to be cremated. She was made comfortable with hospice care. Myrna's memorial service was a celebration of a life well lived. It drew a standing ovation from those influenced by her spirit of faith and determination.
Myrna was fortunate to have an honest, trusting relationship with a doctor who was skilled and comfortable in broaching end of life planning. He facilitated a series of challenging but necessary conversations. All the available treatment options were discussed. Both the risks and benefits were weighed, and Myrna felt prepared to make the right decisions. Myrna’s choice to opt-out of unending treatments with diminishing returns is one example of how thinking around end of life planning is changing, and why it is so important to engage in ongoing dialogue around these tough questions.
Discussing end of life decisions
When patients are informed that they have a life-threatening illness, they want to know what treatment options are available. How long will the disease continue, what will the illness be like as it progresses, how will they cope? What we long for is certitude in the face of the unknown, but in the end we must settle for less. These things are hard to discuss. Patients are often unwilling or unable to accept a worst-case diagnosis, and doctors may be similarly unable to accept the limitations of their own abilities to heal.
An article by Frank J. Weinstock, MD, and Lee J. Johnson, JD, on the Modern Medicine Network’s website frames the physician’s responsibility to know and document a patient’s wishes. The article specifies that end of life decisions must be made by the individual, the individual’s family, or by the hospital’s ethical committee.
If the patient has capacity and can communicate, then it is the patient who makes end-of-life decisions. Questions that can be asked are many: Does the patient understand the fact that he or she has arrived at a terminal state? Does the patient have the right to die? What about removal of life support, and in the few states where it's permitted, assisted suicide?
If the patient isn't able to communicate, then you [the physician] must get guidance from family members as to what the wishes of the patient are or might have been, especially if an advanced directive has not been signed. In spite of a well-designed living will, some or all of the family members may change their minds and decide that they don't want to abide by the desires of the terminally ill patient. The hospital's ethical committee and possibly the hospital's attorney may have to intervene. (1)
Living with a terminal diagnosis is likely the most stressful situation encountered in one’s life. Emotions run high as literal life and death choices are discussed. Avoiding advance care planning may compound issues for the patient and his or her loved ones. If an advance directive has been prepared, is the family willing to follow these wishes or not? Is the physician involved able to engage fully in the disclosure of all options, even those that are a challenge to consider; even the ones that might mean letting go sooner rather than later?
End of life discussions and valuing the right to choose
Everyone knows of at least one story wherein a miraculous recovery occurred. Stories of recovery inspire hope. Such stories tend to encourage choices to prolong life in spite of compromising quality. Enduring emotional and physical pain loses significance in the context of miraculous recovery. Physicians are now obliged by Affordable Care Act legislation to engage as advanced life planning counselors and to support end of life discussions and decision making.
In a recent article in The New York Times on this piece of legislation, Dr. Barbara Levy, chairwoman of the American Medical Association committee, said: “We think it’s really important to incentivize this kind of care, the idea is to make sure patients and their families understand the consequences, the pros and cons and options so they can make the best decision for them.”(2)
Affordable Care Act (ACA) legislation allows Medicare to reimburse physicians for advance care planning that includes conversations with patients and their families about end of life care. Opponents of this legislation believe that the provision devalues life, depriving the terminally ill of curative treatments. However, these arguments may leave healthcare consumers uninformed of their right to measure quantity vs. quality of life for themselves. Medical social workers attest that many terminally ill patients had not been counseled to develop advance directives, which serve as personal declarations for end-of-life wishes.
The ACA intends to empower patients and their families to make well-informed healthcare decisions, even when the patient’s wish is purely to be kept comfortable during the dying process. Myrna's story and those like it should give ACA opponents cause to reexamine the legislation and consider the positive outcomes that come from advance care planning. For many, it's not about how long we live, but how well. Physicians are becoming more comfortable with embracing options like palliative and hospice care. In contrast to curative care, hospice care neither prolongs life nor hastens death. Palliative care provides medical and emotional support throughout the advancement of a disease, specializing in pain and symptom management.
Being mortal in the face of curative treatment
Myrna's story provides hope. It also raises the issue of confronting uncomfortable truths in determining if modern advances in curative treatments enhance or diminish the quality of life. In his recently published book, Being Mortal, Dr. Atul Gawande, a surgeon at Brigham and Women’s Hospital in Boston, makes the argument that: “People with serious illness have priorities besides simply prolonging their lives … If your problem is fixable, we [physicians] know just what to do. But if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity and extraordinary suffering.” (3)
If and when you're confronted with the looming loss of a loved one, or when faced with one’s own mortality, seek answers to tough questions. Consult with trusted individuals on concerns about end of life care. Be sure to engage physicians in conversations and explore all options and possible outcomes.
*Image by Vic found here: http://bit.ly/1PWqxYO
(1) http://medicaleconomics.modernmedicine.com/medical-economics/news/modernmedicine/modern-medicine-feature-articles/physicians-role-end-life-deci?id=&sk=&date=&pageID=2
(2) http://www.nytimes.com/2014/08/31/health/end-of-life-talks-may-finally-overcome-politics.html
(3) http://www.nytimes.com/2014/11/09/books/review/atul-gawande-being-mortal-review.html?_r=0