Careful treatment: Caregivers’ stories
Former caregiver David Cook reflects on his experiences caring for his dying wife, highlighting the need for better help for other caregivers.
- Brittany Maynard chose medical assistance in death after being diagnosed with terminal brain tumors.
- Maynard’s husband, Dan Diaz, supported her decision to become a caregiver and move to Oregon for access to the state’s death along with dignity.
- Legal death medical aid in 11 states and Washington, DC allows terminally ill patients to take medication and end their lives peacefully.
- Experts emphasize the importance of open communication regarding death and end-of-life care.
Dan Diaz and his wife, Brittany Maynard, took their dogs Charlie and Bella for a walk along with their friends and family on the morning of November 1st, 2014. Later that day, Maynard passed away.
Doctors discovered Maynard’s brain tumor exactly 10 months ago on New Year’s Day. The couple had been married for over a year at the time.
“We were just a married couple,” said Diaz, 53. “We went out for sushi on a Friday night.”
Within days of cancer diagnosis, Maynard decided he wanted to move from California to Oregon to access the state’s medical aid in the dying program. Diaz followed her without doubt, knowing that dying gracefully is important for Minard.
That fall, she began to suffer from pain that could not even relieve morphine, Diaz said. She couldn’t sleep. Her symptoms included nausea, vomiting and seizures.
He remembers what Maynard told him: “Dan, I can feel it. I know this cancer is killing me. I can feel this is ending my life.”
Maynard passed away at the age of 29.
Everyone dies, but talking about death is still a taboo for many families. This topic is particularly emotional for family caregivers who devote much of their lives to helping their loved ones feel comfortable. But not talking about the inevitable can make dying logistics more stressful than necessary, experts say, especially when there is little time.
Some patients feel comfortable with dying medical assistance. This allows individuals within six months to live their options to obtain medicines that will help them die peacefully at the time of their choice. Because the patient is taking the medication himself, it is not considered euthanasia, when someone administers a lethal drug. Medical assistance for death is legal in 11 states and in Washington, DC.
“Many patients see their families die and truly express this desire to protect them, potentially allowing them to witness a truly traumatic or truly burdensome death,” said Anita Hannig, anthropologist and author.
Some caregivers say that medical assistance that led to death has also helped their grieving process.
Maynard took his medicine, wrapped in Dias’ arms and surrounded by his loved ones. Within five minutes, Diaz said she had fallen into a peaceful sleep. Within 30 minutes, her breathing slowed down and she died.
In the weeks leading up to her death, Maynard had attracted the attention of millions of people, sharing her story and insisting on medical assistance to die to expand to more states. Diaz said her resolve also felt like a gift for him by making his role simple and simple.
“All I had to do was support her,” Diaz said.
How can caregivers support terminal patients seeking death?
Candace Dellacona, a family lawyer in New York, specializes in real estate and trusts, but she knows how important it is to plan the death of a loved one. However, she said the concept became “more realistic” as she saw her older and her friends and family struggle to have those important conversations. She was a caregiver for her uncle in New York and helped her care for her father across state lines.
“I do this for my living, but I couldn’t tell my uncle, like, ‘What do you want?’,” the 50-year-old said. “How do you want to make your death look like? What does that mean to you?”
Many people say they want to stay home at the end of their lives. When Delacona hears this, she asks her client:
When patients ask to die or want information about medical assistance leading up to their death, Hannig said it could be jarring for their families.
“It’s not necessarily about the request itself, it’s symbolic,” she said.
Some families will be on board immediately, especially if they are closely aware of the suffering of the patient. Patients who want to access medical assistance in dying need the support of their family caregivers, Hannig said to reach appointments, fill out paperwork and get prescriptions, not to mention moral support.
When families don’t provide that support, she said, because they often denies the condition of their loved ones. Caregivers may be angry because their loved ones are not ready to die.
Catie Kelley, a policy advisor to Americans United For Life, an anti-abortion advocacy group against Dying’s medical aid, said he felt compassionate towards these families. Everyone has the right to withdraw life support care, Kelly said. However, she has problems with patients speeding up the process.
As a prosecutor in a former medical fraud, Kelly said she was worried about patient safety and that she would be worried about ensuring patients are not manipulated by caregivers. She is concerned that laws allowing medical assistance to die will not provide adequate protection to patients, including comprehensive mental health assessments.
Anthropologist Hannig said those who choose to die and choose medical assistance are not suicide, Hannig said. Terms such as “doctor-supported suicide” and “euthanasia” are often used for medical assistance by dying by the enemy, but the terms are not entirely accurate.
Jessica Empeño, national director of clinical engagement at Compasion & Choices, a nonprofit advocacy group that supports medical assistance that leads to death, says the biggest difference between death medical assistance and phrases like “doctor-assisted suicide” is that patients are in control of death medical assistance. When a patient is taking medication, the doctor doesn’t even need to be in the room.
Most importantly, Empeño said these patients did not want to die, “But they are dying.” Applying and taking medication is a long and involved process, as the prognosis is only eligible for patients under 6 months.
One thing Empeño, Kelley, and Hannig agree to is that when a patient asks to die, it is important to ask questions about the level of pain, comfort and mental health.
Caregiving is “the best way to say I love you.”
Death is not the subject of all family taboos. Jacob Shannon, 47, said death and medical assistance were the usual topics of his family’s conversations, his mother worked in public health and his stepfather was a medical executive who became a doctor.
His mother, Linda Shannon Brustain, a long-standing medical aid for dying advocates, sued Vermont to remove the program’s residency restrictions because he did not allow Connecticut, where she lived, to die. She passed away in Vermont in 2024 after cancer returned. Oregon is the only other jurisdiction with no residency requirements.
On her way back from her first visit to her mother after her remission was over, Shannon said, “I shouldn’t be here. Why am I in the car? I need to be with my mother. I need to take care of her.”
He left his home and family in Colorado and spent the rest of his mother caring for her.
“I really believe that caring for the people I love when they need the most is the best way I can say I love you,” he said.
Open communication is key to preparing and preparing for the death of a loved one, Shannon said. “Have a tough conversation,” he says, ready to help in every way: cooking, cleaning, laundry, errands.
“It’s not just about taking care of your loved ones at the end, it’s not just their bedside,” Shannon added. “It’s taking care of life. And don’t be scared, jump into it. Just help.”
“Please have a conversation.”
Not all patients are allowed to move to any of the 12 jurisdictions that allow medical assistance to die. Moving can be expensive, and some patients do not have the ability or time to move.
The best thing caregivers can do is defend their loved ones and plan their deaths, Empeño said. Ask about what patients want when they are dying. They want visitors at these final moments, and who should make the final decision if the patient cannot do it themselves.
Ultimately, Delacona feels that clients who talk about death are more empowered and peaceful.
“It really helps to have a conversation and openly talk to you to plan the end of your life,” Empeño said. “That’s something we can’t underestimate enough value.”
As Maynard’s caregiver, Diaz said he is constantly studying, asking questions and reaching out to clinical trials that reject his dying wife. He took a break from work. He helped her with a dozen or so medications, experiencing medical costs while she was asleep, and attempting to take things one day at a time. Caregivers “do everything they can to ensure they have a good day,” he said.
They were talking about her death so Maynard is “calling shots,” he said, Diaz doesn’t feel any regret or guilt at his grief. Now Diaz advocates medical assistance to die full-time, and he keeps his promise to his late wife.
“She passed away in the same way she lived her life with grace, compassion and love.”
Madeline Mitchell’s women and the role of USA Today’s nursing economy covering the caregiving economy is supported by a partnership with Pivotal Ventures and Journalism Funding Partners. Funders do not provide editor input. Please contact madeline at x at mimitchell @usatoday.com and @maddiemitch_.