Michelle Anderson-Benjamin has end-of-life matters on her mind.
The New Yorker received a diagnosis of stage 1 triple-negative breast cancer in 2020 at 36 years old, followed by a stage 4 diagnosis in 2022, and her disease has metastasized to her brain. Between the 2020 and 2022 diagnoses, she served as an end-of-life caregiver for her father, and she, a certified mental health coach, works as a death doula.
Death doulas, also known as end-of-life doulas, “provide companionship, comfort and guidance to those facing a terminal illness or death” via nonmedical holistic support encompassing “emotional, spiritual and practical care,” according to the International End-of-Life Doula Association.
“I am a stage 4 thriver,” Anderson-Benjamin says. “I have triple-negative breast cancer, so I am considered, on paper, terminal. I'm a mom of two. I've been metastatic for three years, [and] I've had cancer for five. Just recently, I had progression to my brain. So, I just had ... brain surgery [two weeks ago]. But in the midst of me going through this journey, I'm a student. I've always been a student of life, and for me to better understand things, I like to invest in learning about [them].”
Anderson-Benjamin says she is considering in-home hospice care as part of her end-of-life planning.
“Hospice is nice — in some places, it's nice. But I have a home in Long Island that I own, and I have an apartment in the city, and I have it set up my way,” she says.
Hospice, as defined by the American Cancer Society, is a special kind of care that focuses on a person’s quality of life and dignity as they near the end of their life.
“If you have a prognosis of six months or less to live, hospice care really lets you live better during that time,” says Melissa Mazor, assistant professor in the Division of General Internal Medicine and assistant director of community outreach and engagement for the Tisch Cancer Institute at Mount Sinai in New York. “It can be provided in the home, [or] it can be provided in a hospice unit. It can look very different depending on who the hospice provider is, but it really is about managing end-of-life symptoms and ensuring that you're not suffering during the end of life.”
For Anderson-Benjamin, who has helped so many at the end of their own journeys, her goal for her final days is to maintain a sense of control.
“Although there are some hospice places that are really nice, some of them, you walk in and it's like, ‘What the hell?’ I don't want that for my kids,” Anderson-Benjamin says. “Because it's like going to work and having a bad experience on the train that can mess up your entire day. If I can control that, then I want to control it as much as I can. My kids understand that their mom is not a quitter, but their mom is a realist, and I do everything that I need to do. I label it as putting the chess pieces on the board. I put all the chess pieces on the board [and] set up the board the way I needed to so I could play the game. That's what I've done from the very beginning.”
What Hospice Is — And What It Isn’t
In hospice care, “the best outcome will be someone [who] has excellent terminal care. They're comfortable, they're not in pain, and they get to leave this Earth on their terms,” says Dr. Michael K. Wong. “For all of us, that's the best that we can hope for, because we don't decide how we come into this world, and very few of us will decide how we leave this world. And this is an opportunity to really put that together in a way that's meaningful to you and the people you leave behind.”
Wong, a member of CURE’s advisory board, is the physician-in-chief at Roswell Park Comprehensive Cancer Center in Buffalo, New York.
Hospice, Wong emphasizes, is a service — not a diagnosis.
“People don't die of hospice; it's not a condition that you fix, it's just a service,” Wong says. “Basically, it's a service that can help people who have needs, especially in advanced stages of their disease. It opens up benefits from insurance that are not available until I say the word ‘hospice’ out of my mouth.
“Examples include, if I say ‘hospice,’ suddenly, you can get a special bed. Now this, of course, depends on the insurance, but you say the word 'hospice,' [and] suddenly your hospital bed appears in your house. You say the word 'hospice,' [and] you suddenly have suction devices. These are aids that can help with your bedside commode. You have all these services [that were] not available beforehand,” he continued.
Hospice care is a type of supportive palliative care, though the two terms are not synonymous, as Dr. Kerin B. Adelson explains. Adelson is the chief quality and value officer of The University of Texas MD Anderson Cancer Center in Houston.
“Palliative care, generally, we think can start at any time in the cancer journey,” Adelson says. “It can be given concurrently with disease-modifying or cancer-directed therapy, and it is also whole-person care directed to reducing symptoms and maximizing quality of life. Hospice is generally more reserved for that end-of-life phase when the cancer-directed therapies are no longer working, and it's a subset of palliative care.”
There are alternatives, Wong says. “The alternative is that you die in my [intensive care unit], intubated, ventilated. You’ve got tubes coming out everywhere, with the monitor going full blast, and your family members are crammed into a hospital room with all kinds of equipment — in a situation where we could have avoided all that and had a more peaceful environment.”
Persistent Disparities Regarding Access and Utilization
However, disparities and inequities remain regarding access to and utilization of hospice care, as CURE learned.
“There are organizations [that] take on hospice cases now, regardless of remuneration, but for the most part, these are things tied to your insurance,” Wong says. “So the same disparities that occur with access to health care are the same disparities that you would have with hospice. There's a stigma to that, as well. There were some populations who, in the past, have had difficulty accessing medical care, and when you mentioned hospice, they interpreted that as an abandonment of care. I mean, [they think], ‘You don't want to treat me, and you're just going to throw me to the wolves.’”
“A lot of people worry that when they accept hospice, they're giving up, and that hospice is for people who no longer [want] to fight,” Adelson says. “So, there can be a lot of negative associations in that sense, and the truth is ... numerous studies have shown that patients who actually focus on palliative care, or integrate palliative care with their oncology care, actually sometimes end up living longer.
“When you are not in pain, when you are surrounded by your loved ones, when you are not going in and out of the hospital for different interventions that are likely [not to] have benefit, people may find that they actually live longer because they have more to live for,” she continued.
Disparities also exist due to geographic, social and racial reasons, Mazor says.
“There are some states where access to palliative care is very limited,” she says. “For example, access is particularly challenging in rural areas, where only 17% of rural hospitals report having palliative care programs, compared to 90% of urban hospitals. For-profit hospitals are also less likely to have palliative care teams compared to nonprofit hospitals. A lot of the work that I do is around racial and social disparities. For example, I work specifically with Black and Latino women who have metastatic breast cancer, overcoming some of the myths and misconceptions about what palliative care is and what hospice care is. Because of our historical mistreatment of certain populations, there is often greater mistrust around the idea that palliative care means somebody is giving up on them or that they’re not getting the best care provided."
And, Adelson says, medical facilities aren’t always able to offer ideal hospice services.
“One of the biggest challenges with hospice is that the daily rate that is paid [by insurers] is extremely low, so hospices cannot always provide the degree of care that a dying patient may need. That is one of the limiting factors,” Adelson says. “As patients near the end of life, they become more symptomatic [and are] less able to care for themselves, to get food, to do toileting, [and] they may need more and more help, and the hospice benefit does not pay enough to support care in the home or to pay for care in the home, so it's really dependent on the patient's loved ones with providing that day-to-day care, or patients who have resources to pay for it out of pocket. And that can be a limitation for a lot of patients.”
‘Her Death Was Peaceful’
Gus Reid says that he and his late wife, Andrea Werblin Reid, had “mixed experiences” with hospice care during her ovarian cancer journey. Andrea, known as Andi to her loved ones, lived in the suburbs of Boston and received her diagnosis in 2019. She died in 2022, at 57 years old.
“Every individual person [who] we talked to in hospice was great,” Gus Reid tells CURE. “It was just [that] the hospitals were in a real mess with COVID[-19] ... so it was hard for the right information to get to the right people.”
Andi’s final interaction with hospice services, Gus Reid says, was on the day that she died.
“She'd gone downhill much quicker than anybody was expecting in the last couple of weeks of her life. They suspect that it got into her brain, which is very rare for ovarian cancer, so I don't think that it [got] caught very quickly. Then, by the time hospice knew that they were needed, she was dying, so we signed her up for hospice care that day, and then she died that night. So that was a little unfortunate. They were very nice, they were very supportive, but ... it was a little bit late, I think.”
Gus Reid says a friend of Andi’s, who worked as a hospice nurse, proved to be invaluable in her final hours.
“She ended up dying in the oncology ward, and the only reason that went OK for her was [because] our good friend is a cancer hospice nurse, so she came in. She worked in a completely different hospital, but the doctor ... the young guy [who] was taking care of the ward that night — I don't want to say was out of his depth, but he was certainly very relieved when an experienced hospice nurse came in and started telling him, ‘This is what you need to do. These are the drugs that she needs. Don't worry about giving her too much of this ... because it's not going to hurt, harm or shorten her life in any way. She just needs to be comfortable.’ And she did a really good job.
"So it wasn't quite the official hospice care that you would hope for, but she did have good interactions with the hospice nurse in the end, and it meant that her death was peaceful.”
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