My mother, Alice, had a good life. She shared a birthday with Queen Elizabeth II, which she found interesting, and I thought the two of them might just keep going forever. Alice married for the second time at 50 and began traveling the world. She wore hats. Later, as a widow, she wrote poetry, joined a poker club, and posed nude for an artist friend. And when she was diagnosed with cancer, she made sure to have a good death.
So how do we do that? How do we approach an event we know is inevitable, but we’d really rather not attend? Advances in medical treatment have made many of us feel that planning for the end of life, or even acknowledging that death might be imminent, means that we’re giving up. Our doctors may want us to focus on recovery instead of dying. The people we love may want us to “keep fighting,” on the chance that we could survive a while longer, even if treatment has become more of a burden than a benefit.
Here’s the reality: Good information and thoughtful planning can help you stay in control of your life up until the end. Your loved ones will fare better emotionally after your death. Best of all, you are very likely to live longer, and enjoy yourself more, if you approach treatment and make choices based on what you really want. You can plan a good death.
Trudy James helps people “live deeply and die well.” A long-time hospital chaplain, she spent decades comforting dying patients and their caregivers. In retirement, she began getting people together to talk about dying before it became a short-term reality. It’s generally easier to discuss death when it’s still more of a concept.
“People carry around very fearful images of death. I try to replace those images with the naturalness of it and give them some control,” says Trudy. Being able to talk about wrapping up a life is an important part of doing it well and enjoying the time that’s left.
Through her organization, Heartwork, Trudy and other trained facilitators lead groups in four-session workshops. It starts with stories, as people share their own experiences or thoughts about death, saying goodbye, and the legacy they want to leave. They learn about available resources, and they discuss the essential decisions that will have to be made at some point. By the end of the workshop, Trudy hopes participants will have completed an advance directive and talked to their families about their wishes.
Essential decisions include:
- Treatment choices, including possible discontinuation of treatment.
- Choosing the person who will make health care decisions for you if you can’t make them yourself.
- Hospice care, organ donation, death with dignity, dying at home, quality of life.
- Funeral or memorial service wishes.
In 1994, the Project on Death in America began a nine-year mission to “transform the culture and experience of dying” through providing grants for research, developing model systems of care, and a Faculty Scholars Program to train palliative care specialists. Dr. Anthony Back, a PDIA grant recipient, is now co-director of UW Medicine’s Cambia Palliative Care Center of Excellence. “This is a specialty that cares for patients with serious illnesses throughout their treatment and end of life,” explains Back. He says it’s becoming the standard of care in many hospitals.
There are misconceptions about palliative care. One is that it means giving up medical treatment. Another is that people don’t need it until close to the end of life. Instead, says Dr. Back, the point of palliative care is to help you live as well as possible for as long as you can.
Providers of palliative care include doctors, nurses, social workers, and spiritual caregivers. Ideally, they’re part of a seriously ill patient’s medical team early on. They help patients and families understand the context of all the medical information they’re getting, so that they can make decisions that include consideration of their own values.
“We’re helping patients figure out if a treatment is still worth it. Will it help me do the things that I still need to do in my life?” says Back. He adds that advanced cancer patients who receive palliative care may actually live longer.
Hospice is an option for terminally ill people to receive care and support, usually at the patient’s home or the home of a loved one, although services are available in other settings. To qualify, recipients must have a life-threatening illness with a prognosis of six months or less to live. An RN case manager coordinates a team that offers services such as counseling for patient and family, bathing, chores, errands, medicine oversight, massage, or music therapy. Dana Brothers, outreach and communications manager at Hospice of the Northwest, says that, “Once someone is on hospice, it’s about comfort and meeting the goals of the patient.”
Hospice can also provide equipment to make life easier at home, such as a hospital bed, oxygen, a bedside table or a commode. Sometimes it’s more personal. Hospice of the Northwest was caring for a woman who wanted to die at her cabin on Orcas Island, but it wasn’t possible. So her hospice team collected shells and flowers for her, reminding her of the beach.
Patients who go on hospice often live longer than expected. They may leave and return. As Brothers says, death is the most important event that will occur to every single person, and we should plan for it so that we can live the way we want.
I’ve heard it said that knowing your expiration date can be a gift, allowing time to complete your bucket list, mend fences, or quit your job and go to France. It may not be that way for everyone, but just knowing there are options available is a great comfort.
Alice, my mom, took control of her life with help from her daughters. As often happens with pancreatic cancer, it wasn’t found early enough for lifesaving treatment. After a few chemotherapy sessions to reduce the tumor, she agreed with her doctor that additional chemo would not make a difference and would, in fact, make her life less pleasant.
The next few months were busy. Alice finished writing a family history, watched Dancing with the Stars every week, and enjoyed visits with her many friends. She decided that 2009 was not a good year to die and announced that she would wait for 2010. After designing her cemetery stone and having it installed, she went to see it several times with anyone who wanted to go. She was quite proud of it.
Hospice providers washed Alice’s hair, gave her sponge baths, changed her sheets, and massaged her legs. Her case manager kept an eye on her medications, ordered a hospital bed, and brought in oxygen. Alice was slipping away, but she was doing it on her own terms.
On my last visit, we planned Mom’s memorial service together and made arrangements to donate her brain for research. I will always be grateful that she could talk with me about those things, and that she gave me a very special message before I went home to Seattle. She died in 2010, with my sister beside her.
Alice had a good life, right up until the end. I miss her every day, but I have a painting of her that makes me smile. She’s wearing a hat and her elfin grin…and very little else. She did it her way.
Priscilla Charlie Hinckley has been a writer and producer in Seattle television and video for 35 years, with a primary interest in stories covering health and medicine, women’s and children’s issues, social justice, and education. She enjoys taking a light-hearted approach to serious topics.