Compassion and Empathy at the End of Life: Advanced Care Planning Takes a Giant Step Forward

On July 8, 2015, Medicare took a significant step towards helping people make the right decisions for their care by proposing to pay in 2016 for physicians who spend at least 30 minutes discussing and documenting patient preferences and values at the end of life that may be used to guide decisions for Advanced Directives. This proposal which is part of the proposed rules for 2016 physician reimbursement is now open for public comment.

Because this part of the 2016 physician payment program has widespread support, I expect it to be written into the final rule. This will help physicians focus on the patient's desires and beliefs and help them to make the correct decisions for themselves regarding whether they want resuscitation efforts if their heart stops beating, and if they want life support on a respirator, or whether they want comfort measures only. Supporters of these Medicare payments for end of life counseling include (along with many others) the American Association of Family Practice, American College of Physicians, American Medical Association, American Nurses Association, the Alzheimer's Association, the American Society of Clinical Oncology, Livestrong, and the National Council on Aging.

At the same time that the administration is proposing these rules for payments, congress itself is moving the issue forward. Senators Isakson and Warner have proposed the Care Planning Act of 2015. This act also directs Medicare reimbursement for discussion and planning for end of life care, but also directs testing of new models of more intensive services for patients who have advanced diseases (but it prohibits use of funds in violation of the Assisted Suicide Funding Restriction Act of 1997 which prohibits euthanasia).

But will the Medicare proposals and even the Care Planning Act directly or indirectly promote euthanasia? Physician assisted suicide has been gaining traction around the country. Already, four states have laws permitting euthanasia in certain circumstances (Oregon, Washington, Montana and Vermont). In my state California, the California Aid in Dying Act SB128, which had passed the Senate, just was withdrawn in the Assembly for lack of support.

A recent film, The Farewell Party, illustrates why euthanasia has supporters and detractors. This film about assisted suicide (believe it or not, it is a comedy, written and directed by Tal Granit and Sharon Maymon) showed how compassionately assisted suicide worked in several people. But in others, it did not succeed, leaving patients expecting to end their lives with the challenges of continued survival. In real life, physicians have not been adequately trained to perform assisted suicide reliably without regrets of the family, failure due to patient noncompliance, or even inadvertent use of drugs by people other than the patient. And in evaluations of physician assisted suicide use in Oregon, many people desiring assisted suicide have suffered from depression that had been inadequately treated.

The Care Planning Act helps to replace the "death with dignity" desires of people with programs that promote life with dignity and with carefully developed advanced care directives in keeping with individual's values. The Medicare proposed rule is not as explicit in promoting better psychosocial and pain controlling care, but will indirectly promote that care as well through discussions with the patients about their symptoms.

In discussions that I have recently had with my patients, which might qualify for reimbursement under the proposed regulations and legislation, I counseled Ann, age 75, who has metastatic colon cancer undergoing chemotherapy. But she has been able to enjoy family celebrations, some travel, and social events. She completed Advanced Directives that included complete support, but with Durable Power of Attorney for Healthcare in the hands of her daughter so she would not be kept alive on life support. But Sally who has breast cancer in complete remission on hormonal therapy but who has some memory loss related to her age of 80 elected, after discussion, to have comfort measures only but not to have resuscitation or life support. Plans for each of these patients were developed, signed and witnessed with support of the patients' families, and placed in the patients' medical records. Both of the patient's decisions were correct... for them based on their values and desires. You might have decided differently, but the discussions supported by the regulations and legislation would have increased the chances you would get a complete discussion of your options.

Here are Dr. Cary's tips for advanced planning for you.
• No matter whether you are healthy or have an illness, you should discuss advanced directives with your physician and complete Advanced Directives regarding amount of care you would want in case of emergency or worsening condition.
• Be certain your discussions include your values, your desires, and your wishes for life when healthy and when physically or mentally challenged.
• Be certain you know how to change your decisions if you have a change of attitude at any time.
• Be certain the serious conditions of depression and pain have been adequately treated, or get a second opinion immediately.
• You should have completed a Durable Power of Attorney for Healthcare so you have chosen who can make decisions for you if you are incapacitated.
• If you need more advice about care at end of life, including palliative care and hospice decisions, see my book Surviving American Medicine.

As my Boy Scout motto always told me, and as I believe today and emphasize with all my patients, BE PREPARED.