As a physician who has helped families through many end-of-life situations, as a cancer survivor who has had to deal with my own mortality and as a loving son who had to help my father think through his end-of-life wishes as he battled bravely against metastatic cancer, I have spent a lot of time thinking about my own wishes for care if and when that day comes that death is inevitable and I am unable to make decisions for myself.

Have you?

Have you signed advance directives – a living will and/or a durable power of attorney for healthcare?

Have you discussed your wishes with your family and with the person you have designated that you wish to make decisions on your behalf?

Would you wish to be an organ donor?

You can relieve a lot of guesswork and often mixed emotions of those you leave behind if you take the time now to make your decisions known, and you can document your wishes by filling out those forms. The forms and more information about advance directives can be found here. You don’t need a lawyer to create these documents and once you are finished, you can ask that they be added to your medical record. You can change them at any time.

My guest blogger today is Dr. Kurt Seppi, executive medical director for St. Luke’s Health System. He is leading a community-wide effort to better inform people about end-of-life issues and the need for making your choices known so that they can be honored. Here is Dr. Seppi:

- David C. Pate, M.D., J.D.

Advanced care planning is a crucial component to improved care, one of the areas of opportunity that St. Luke’s has identified and an area of particular interest to me as St. Luke’s Health System executive medical director.

As a family physician with 30 years of practice experience, I also have seen many patients and families struggle because they were not prepared to make the difficult and complex decisions about end-of-life care. While it makes sense that older adults in particular should be asked about their beliefs, values and goals in relation to end-of-life care, even those discussions are not usually conducted in a timeframe and manner that allow individuals to understand why advanced care planning is important, the benefits of planning and the consequences of not planning.

It is for these reasons that St. Luke’s has begun working with a new community initiative called Honoring Choices Idaho. This initiative is starting in the Treasure Valley as a partnership with both major health systems, several community organizations and the four major health insurance companies, with plans to engage many more organizations and eventually expand through the entire state.  

The goal is to create a systematic approach and standard of care that ensures every person has the opportunity to understand, reflect upon and discuss healthcare goals in the context of their values and beliefs. This is especially important as the end of life approaches, where personal choice and shared decision-making should drive treatment decisions.

My own family has struggled with this over the last few years. My mother died at the age of 89 after an illness from an infected hip arthroplasty. Prior to this illness, she was living independently and had no major health problems.

Several years before her illness, I tried to have the conversation with her about what she would like done in the event she had a catastrophic event and could not express her wishes. The discussion did not go as planned, and ended with her saying, “Well, this is a nice conversation to have with your mother.” 

At that point, I gave up and decided to wait for another opportunity. I also hoped that her physician would address the issue. Hope, of course, is not a strategy, and no advanced care planning was addressed by her physician.

After she became ill, she was hospitalized on at least three separate occasions, visited two separate rehab facilities, was placed in several different skilled nursing facilities and was seen by multiple physicians (but not by her primary care physician), all of whom did a good job of addressing her immediate needs.

On no occasion did anyone talk with her, myself or my two siblings about end-of-life care planning. We finally found an acceptable assisted living center, and she made it clear she did not want any surgery or hospital readmissions. With the help of a colleague, who was the medical director of a hospice service, we were able to have “the conversation” with my mother, and almost immediately things improved.  

There was complete agreement and understanding of my mother’s wishes. My sister, who lived close by, was designated as mom’s healthcare agent to make immediate decisions if my mother was unable to do so. The quality of her life and symptom control became the priority, and she died peacefully about eight months later. Our family is convinced that her wishes were followed.

The literature suggests that 80 percent of people with chronic illnesses die in healthcare institutions and that most are incapable of participating in the end-of-life decision-making process because of mental or physical incapacitation. This underscores the need for a designated healthcare agent that can instruct the healthcare team about the patient’s wishes.

Personal choice must be explored with providers, family members and the healthcare agent well before the final stages of illness. When healthcare professionals and families are uncertain about the patient’s wishes, the default is almost always to treat, even if treatment may seem futile, unhelpful and unwarranted.

Among the barriers to detailed advanced care planning related to our present healthcare system, providers and patients themselves:

• Providers may be uncomfortable, unprepared or unskilled at having these conversations in a way that educates and engages patients and families. Time limitations can inhibit in-depth conversations.
• In our present fragmented fee-for-service delivery system, lack of coordination of care across the continuum can lead to conflicting advice and priorities. There is also a tendency for accountability to be diffused across many treating providers, with no one taking primary responsibility to ensure that patient and family choices are reviewed as advanced illness progresses.
• Patients’ personal beliefs may prevent them from making cure vs. comfort decisions. Lack of information and understanding of the importance of planning in advance is a major deterrent. Patients also may not wish to discuss end-of-life care because of concerns about the anxiety it may cause significant others.
• In addition, most advance directive documents are legalistic and do not promote discussions relative to the personal beliefs, values and goals of the person before they become a patient.

And in other instances, the “just get it done” approach used by many healthcare providers means that while documents are filled out, there is not the thoughtful engagement and understanding of patients and their healthcare agents that might support end-of-life decisions. This approach can actually cause more harm than good by leading to vague instructions that are ambiguous and sometimes even contradictory to patients’ wishes.

Honoring Choices Idaho is intended to provide solutions to many of these barriers and will be modeled after the Respecting Choices program of the Gundersen Health System in La Crosse, Wisc., with modifications to fit the needs of Idaho’s population.

The four key elements in designing an effective program include:

• Systems design
• Advanced care planning facilitation skills, education and training
• Community education and engagement
• Performance metrics that ensure quality improvement

Pilot clinics will be launched within the next six months, with plans to have three clinics each in St. Luke’s and Saint Alphonsus standardizing the advanced care planning process over a six- to 12-month period. We are putting in place standardized work flows within clinic settings and trained facilitators that will have the time and expertise to hold informative conversations about advanced care planning at the direction of the patient’s care provider.

We will devise an approach to standardize advance care planning documents, ensure these documents are easily and reliably accessed in the electronic health record and are always up to date as patients’ choices evolve over time.

I am extremely excited about this initiative, which has been shown to improve quality of life and to decrease the stress, anxiety and depression of patients’ families after the death of loved ones. It will help to provide all of us with the opportunity to have meaningful and honest conversations about one of the most intimate times of our lives, promoting personal choice and helping to ensure that wishes are known, respected and honored.