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Key points
- Family members often must make difficult decisions at the end of life.
- Advance care planning can guide family members faced with end-of-life decisions.
- Organ donation is a precious gift to others, while providing solace and purpose to bereaved family members of the deceased.
Celebrity deaths can shake us to the core. Our parents and grandparents remember exactly where they were on November 22, 1963, when TV anchor Walter Cronkite delivered the shattering news that President John F. Kennedy had been assassinated. The deaths of celebrities, especially those who die young, may shock and sadden us. But these tragedies also raise awareness of diseases like actor Robin Williams's depression, vocalist Whitney Houston’s substance use disorder, musician David Bowie’s liver cancer, and rock star Freddie Mercury’s HIV/AIDS.
The untimely death of 53-year-old actress Anne Heche, following a fiery car accident in Los Angeles, is a jarring reminder that driving under the influence of drugs or alcohol kills thousands of Americans each year. Heche suffered a severe brain injury from the crash, and lapsed into a coma. She was kept on life support while medical experts determined whether any of her organs could be donated. According to Heche’s family, she felt strongly about organ donation and helping to save another human life. But what if Heche hadn’t told her family members about her commitment to organ donation? And how do family members decide whether to stop or continue life support for their loved one?
Life or death decisions like these can be gut-wrenching, adding to the anguish of family members who know that their loved one’s demise is imminent. But there are several steps that we can all take now, especially when relatively young and healthy, to guide our family members through the difficult decisions that will someday be required. By clearly stating and communicating those medical treatments we might want (or don’t want) at the end of life, we can relieve our loved ones from making those weighty decisions on their own.
I have written about end-of-life decision-making for nearly two decades, and know how hard it can be for families to broach these difficult topics. Few people like to think or talk about death. Some worry that it’s “bad luck” to talk about a future death. Others think it’s useless to think about death now; after all, how can we make plans for something that is many years away? These hesitancies are understandable. However, by thinking about and discussing these gloomy issues “early and often,” we can help ourselves die on our own terms. We can also help to prevent family squabbles about the best course of care and can protect our loved ones from the guilt that can accompany decisions about stopping life support.
Here are three steps to do now, to help prepare for death no matter how far off. It’s also wise to encourage family and friends to do the same so that you’ll feel informed about their preferences, should you be called on to be their decision-maker.
Do advance care planning.
Advance care planning, which typically involves a living will and a health care proxy or durable power of attorney for health care (DPAHC), allows people to dictate which medical treatments they want or don’t want at the end of life.
A living will formally articulates preferences for care, such as whether to use comfort measures like hospice and palliative care, or more invasive measures like feeding tubes and ventilators. Documenting these preferences when you are still able to make those decisions on your own helps to ensure you’ll die on your own terms—a cornerstone of the “good death.”
Appointing a health care proxy when still relatively young and healthy allows you to designate a particular family member, friend, or physician to make decisions for you, in the event you are unable to communicate. It also clarifies loved ones’ responsibilities and can ward off arguments that could arise around the deathbed. Having these discussions early also prevents panicked choices in the case of an accident (like Heche’s) or if your health takes a sudden and dramatic turn for the worse. It’s important to revisit one’s living will and DPAHC appointment in response to changes in life. For instance, after divorce, people tend to replace their spouse with an adult child as DPAHC.
Discuss your values and preferences with loved ones and care providers.
For all the benefits of advance care planning, some people face obstacles to these formal preparations—like literacy or lack of access to a lawyer who can guide the process. In rare cases, these documents cannot be located at the moment a decision is required.
For these reasons, it’s important to just talk to family about your end-of-life values. In general, do you want to sustain your life at any cost, even if hooked up to feeding tubes? Or do you prioritize comfort and quality of life, over merely staying alive? Discussing these general values can be very helpful to the family members who may be tasked with your decisions at the end of life.
Many resources are available to guide these conversations. Organizations like The Conversation Project have created guides for sparking end-of-life discussions. Advance care planning documents ranging from living wills to the “Five Wishes” program, which helps clarify people’s values about how they’d like to spend their final days, can be a good starting point. Of course, these conversations should be revisited regularly, as people’s preferences can change over time.
Consider becoming an organ donor.
Giving the “gift of life” is one of the most selfless things a person can do. Organ donation is the process of giving a healthy organ or tissue to a person in need, through a surgical procedure of transplant. Donations can be made by both living persons and after one has died. This process requires the consent of the donor while alive or after death along with the consent of the next of kin.
Nearly every major religious denomination in the U.S. supports and encourages organ donation. It’s easy to become a donor through your state registry or department of motor vehicles. Family members often say that knowing that their loved one’s organs are helping others brings them some solace, and provides a sense of meaning as they grapple with their loss.
Death is one of life’s few certainties, but preparing for the inevitable can help to minimize the suffering of the dying patient at the end of life, and can help lessen the grief of the loved ones left behind.
