Even today, there is a lot of confusion about the terminology around end of life planning or Advance Healthcare Directives. The following stories (fictional) are meant to illustrate the different outcomes associated with simply having an Advance Directive compared with the process of Advance Care Planning.
Noreen, age 68, took great care to get her estate in order after her husband died of an unexpected heart attack. In addition to creating a Trust for her financial holdings, her attorney had her sign a Living Will. After asking her if she had any feelings about heroic medical procedures, Noreen told the attorney she “does not want to die like my husband did, with a million tubes in the ICU.” The attorney showed her a pro-forma Living Will, which stated that she “did not want aggressive medical measures if my condition is considered to be futile or I am expected to be a vegetable.” Noreen designated her son Roger to be her health care agent because he lived close by.
When Noreen suffered a major stroke two years later, Roger got a call from the hospital. The surgeon on call wanted his consent to perform surgery to evacuate a blood clot because his mother had lost her ability to speak with the stroke. She told Roger that it did not look good, but she was willing to try to evacuate the clot. Roger called his sister Susy, who got on the next flight to be with her mother. By the time Susy arrived, Noreen was in surgery. Susy asked Roger what the likelihood was that their mother would survive, let alone speak again. Roger replied, “The doctor said 50-50 at best.” She asked Roger if Noreen had left any other instructions. Roger showed her the Living Will that she had signed. After reading it, Susy commented, “Well, I guess we have to ask if she’s going to be a vegetable.” Roger sighed, and said, “I wish she had been more specific. The doctors are talking about a long recovery and small odds that she will speak coherently again. Do you think that’s what she meant by vegetable?”
After surgery, Noreen was not responding to any stimulation and was in a deep coma. “Is she a vegetable?” Roger asked. The doctor told him that the definition of vegetable meant that someone remained in a coma long after the acute illness or event had resolved, so technically, she was not yet a “vegetable.” Then the doctor offered, “I don’t think your mother is going to be able to speak clearly or understand language. I don’t know if she will ever move the right side of her body again, but anything is possible, and we won’t know for certain for several months.” Roger was anguished. Was this what his mother would have wanted? Sadly, Noreen was in ICU for a week before she went into cardiac arrest, and despite attempts at CPR and defibrillation, died in the ICU. Susy observed, “She died just like Dad. I don’t think that’s what she wanted. I feel so terrible.” Roger replied, “I did the best I could with what the information I was given, but I feel terrible too.”
Ellen was a 74 year old with four children and six grandchildren. When her husband Peter died of leukemia the year before at age 76, Ellen helped him through his treatments. When his cancer recurred, Peter decided he would forgo other treatments and enter Hospice Care. They gathered their large family at their home and explained their decision. While there were protests from some of their children, such as, “why won’t you at least give it a go Dad?” their daughter Mary offered that this was his body and life and they must all respect his decision. Peter died peacefully at a hospice facility near their home.
Soon after his death, Ellen pulled her children together and told them she was creating a new Advance Directive now that her husband was gone. A friend had told her about Advance Care Planning and she was going to a local Community Center to talk to an Advance Care Planning facilitator. Several weeks later, she called her daughter Mary and asked if she would consent to be her Health Care Agent (or Durable Power of Attorney for Health Care – DPOA-HC). Ellen asked that Mary meet her at the Community Center to go over her Directive with the facilitator. Mary listened to Ellen talk about what was important for her to maintain quality in her life and how her experience with Peter affected her thoughts about illness and death. She told Mary, “I would like to follow your father’s example. I love life, but do not want to live it at less than full capacity. I am most concerned about my family history of Alzheimer’s. If I develop Alzheimer’s, I would expect you to allow nature to take its course—keep me comfortable, but do not consent to any medical treatment to prolong my life.” Mary felt sobered, but comforted that Ellen had thought this through so carefully. Ellen told them she was going to send copies of her health care guidelines to each of her children, even though she designated Mary as her sole decision-maker. She also called each of them to make sure they had read it and could honor any decisions Mary had to make. Mary was touched beyond words.
In fact, when her mother was diagnosed with Alzheimer’s several years later, she and her siblings all agreed at the outset that no medical procedures or measures would be undertaken to prolong her life, only keep her comfortable. Ellen was diagnosed with pneumonia three years into her Alzheimer’s diagnosis. The caregivers and home nursing agency recommended transfer to the local community hospital, although the nurse admitted that being in a hospital would make Ellen even more confused. Mary refused transfer to the hospital and requested Hospice Care. Even though the nurses questioned Mary’s decision, she felt supported by all of her siblings that she was honoring her mother’s explicit wishes. After Ellen’s death, the siblings gathered to remember their parents and each of them expressed gratitude to Mary for the role she played for their mother.
These two “tales” point out the key differences between simple Advance Directives or Living Wills and, the best option, Advance Care Planning.
- The process of Advance Care Planning is more specific about exact goals for quality of life, and avoids terms like “terminal” or “vegetable.”
- Advance Care Planning is medically informed and address specifics like CPR, ventilators and artificial nutrition and hydration and even the use of antibiotics in some situations.
- Advance Care Planning always communicates health care wishes and guidelines to the designated Health Care Agent during the process.
These examples illustrate the final, and perhaps most important distinction between Advance Care Planning and Advance Directives: Advance Care Planning spares loved ones the guilt and anguish that come with these difficult decisions. In fact, a well known study about Advance Care Planning showed that families that had participated in the process were significantly less likely to experience prolonged grief, excessive drug or alcohol use or symptoms of post traumatic stress disorder after the death of a loved one compared with families that did not participate in Advance Care Planning. (Detering et. Al BMJ 2010 March;340:c1345)
C2it Health aims to inspire more people to take the time for advance care planning. After all, while a form may be easy to sign, if it doesn’t help us achieve our goals, what good is it anyway?
Advance Care Planning
|Involves Health Care Agent or DPOA-HC|
YES (includes an Advance Directive)
|Needs Lawyer to Complete|
|Specifies specific treatment preferences|
For CPR and Organ Donation only.
YES, Often specific to person’s medical history
|Honored in any treatment setting|
Depends on Health Care Agent’s knowledge of the document
Yes. Ensures Health Care Agent is aware of preferences and rights.
YES, but not often amended
Written by: Jennifer Brokaw, MD