Update: Joan Rivers passed away not 12 hours after we originally posted this article.
The recent tragic news of Joan Rivers, legendary comedian, being placed on life support after going into cardiac and respiratory arrest on Thursday has made many of us think about end-of-life choices. Our thoughts and prayers are with Joan Rivers and her family at this difficult time, and we send them hope and strength.
Life support involves many difficult emotions for the patient’s family. Anticipatory grief before the death of a loved one can be overwhelming. When someone no longer has any chance of recovery, or brain death has occurred, is the time when family members are called upon to make the difficult decision to discontinue life-support measures. Remember to be compassionate with those making these impossible decisions, especially if you are the one called on to make choices for a loved one.
The days, or sometimes weeks, of being on life support can give families a chance to say goodbye. I just heard a story about this from one of my friends, who gave me permission to share it with you. Anne was grateful for the opportunity to say farewell to her mother, Betty. Early one morning, while in her usual routine of going in the backyard to feed the birds, Betty slipped and fell into the pool. Anne’s father went outside to check on her when she did not return inside for breakfast and coffee, and called 911 right away, but she was unable to be revived. By the time Anne arrived at the hospital, her mother was intubated and remained unconscious.
Though Betty was unable to speak, Anne was grateful for the opportunity to hold her hand one last time, and thank her for everything her mother had given her. Of that week spent in the hospital with her mother, Anne later wrote, “Those were the most wretched, painful, and precious hours of my life. I really believe Mom could hear what Dad and I said to her, and I think it eased her transition listening to her favorite old songs, hearing our voices, and knowing that we were going to survive, somehow, without her.” The time gave Anne an opportunity to come to some fragile peace with the inevitability of losing her mother.
Anne’s sister, Ruth, felt very differently. “The woman lying in that hospitable bed with tubes and constant beeps from the surrounding machines was not the mother I wanted to remember. Our mother was a dancer, lithe and full of movement and life, making us all fall out of our chairs with laughter during our weekly games of Scrabble, and singing as she fixed supper. I know she hated being that way, and I loathed seeing her in that condition.” Ruth talked to their dad every night, urging him it was time to let Betty go.
Both Ruth and Anne were grateful that their mother had left a detailed living will, and that their father was able and willing to follow her wishes. Simple advance directives, including a living will (what steps you want taken to preserve life and under which conditions) and medical power of attorney (designating who you want to make the decisions) vary from state to state.
When the doctors said that hope for any sort of meaningful recovery was impossible, Anne and her father held Betty’s hands as the machines were stopped. Ruth did not want to be in the room, saying she preferred to remember their mother as she was before the accident. “God, I wish those machines could have saved her life,” Ruth told Anne. “The only good thing about those damn machines is that they allowed Mom to fulfill her wish to help others after she died.” Betty’s gift of organ donation helped four other people.
Ruth was horrified when her uncle, her father’s brother, said she was “callous to not give Betty a chance to live.” She added, “He knew nothing about the medical situation or my mom’s wishes, yet he felt so at ease judging me. We used to have a warm relationship, and now I can never look at him the same way again.”
The decision to cease life support is deeply personal, and should not be commented on by other family members, friends, or especially acquaintances. It is important to have advance directives in place to ensure that the person you most trust is making final decisions. Some longtime partners are stunned when the parents their loved one had not spoken to for years are given the rights to make healthcare decisions, even excluding the partner and friends from the hospital room.
Advance directives can always be revised or altered at a later date should you change your mind, but too many people put off committing their intentions to paper, thinking it is morbid and avoiding thoughts of their own mortality—hoping, as we all do, that their passing is instantaneous and in their sleep at the ripe old age of 150. This leaves the family in the dark, not sure of the person’s wishes and often at odds with each other in protracted battles at a severe emotional and financial cost.
Tips to Start Your Own Advance Directive:
- Brainstorm a list of people you trust, such as close family members and friends, to give medical power of attorney, eventually choosing one person and an alternate. This would be the person who will follow the directions in your living will and help make decisions if, and only if, you are unable to.
- Start a discussion with your loved ones about their and your values regarding end-of-life care. Be specific regarding various life-sustaining treatments: whether you want to be intubated (have breathing tubes inserted to help you breathe), receive artificial nutrition and hydration if you can no longer receive sustenance through your mouth, receive CPR should you experience cardiac or respiratory distress, or have a DNR (“Do Not Resuscitate”) order in place, which must be signed by a doctor, meaning you do not want any CPR performed.
- Ask your doctor, public health department or local state bar association for advance directive forms to fill out. Resources to learn more about end-of-life decisions and state-specific documents can be found at the National Hospice and Palliative Care Organization. Have the forms signed by a witness or notary if required in your state.
- Keep your advance directive in an easy-to-find place, and give copies to your primary medical power of attorney designee and alternate (in case the primary person is traveling or otherwise inaccessible). The best prepared, most carefully thought-out advance directives in the world will not help if they are hidden in the back of a sock drawer or unlabeled in a messy filing cabinet at the time of an emergency.
- For more information about end-of-life choices, watch Dr. Ira Byock speak about normalizing end-of-life care on Open to Hope TV. Dr. Byock, author of Dying Well, speaks passionately about an advance directive as a way to care not just for yourself, but also for your family.
For those of us in good health, it is a gift to loved ones to prepare advance directives, and store the documents in an accessible place, to let our families know our intentions and relieve them of the responsibility of guessing our wishes in such an emotional time.