Category: Caregiving

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7 ways to support a loved one with terminal cancer

Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’

BY Gina Van Thomme

It can be challenging to find the best ways to support a friend or family member with terminal cancer — that is, cancer that can’t be cured or has stopped responding to treatment.

You want to support your loved one, but not overwhelm them. You want to be there for them, but also give them space. You want to say the right thing, but perhaps have no idea what that is.

To help, we asked senior social work counselor Malory Lee for advice on supporting a loved one with terminal cancer.

Be present, even if you don’t know what to say

It can be hard to find the right words to say to a loved one with terminal cancer. But often, showing up with a listening ear is far more important than knowing exactly what to say.

“We don’t have to have an answer. We don’t have to even know what to say all the time. And we don’t have to be worried about saying the right thing all the time. I think most important is just being there,” Lee says.

Don’t be afraid of silence, either. Lee says resisting the urge to fill silence can give both you and your loved one the time and space to understand and process what you are going through.

Allow yourself to feel complex emotions

A terminal cancer diagnosis can understandably bring a variety of emotions. These might include sadness, fear, anxiety, anger, shock, hopelessness and existential dread. Lee says all of these emotions are perfectly normal.

Another common emotion is anticipatory grief, which Lee describes as grief for an expected death that hasn’t happened yet. 

“A lot of the time, it’s really the exact same experience as grief. It can feel the same and be just as intense as the grief we experience after a death,” she says.

Although these emotions can be uncomfortable, Lee notes it is important for those with cancer and their loved ones to feel them rather than ignore them.

While navigating emotions surrounding a terminal cancer diagnosis, Lee encourages caregivers to be aware of persistent hopelessness or suicidal thoughts which may point to depression. If you or a loved one is experiencing depression, reach out to a doctor or counselor for support.

“Going through grief and dealing with terminal cancer does not mean we have to feel depressed,” she says.

Avoid statements that compare or minimize someone’s cancer experience

Lee suggests avoiding excessive positivity or statements that start with ‘at least’ when discussing terminal cancer. While phrases such as “At least you had this time to prepare” or “At least you have time to spend with loved ones” may have good intent, Lee says they can minimize the pain someone with terminal cancer is experiencing. 

Similarly, approaching a loved one’s terminal diagnosis with too much optimism and positivity can have the opposite effect.

“It may discount a real emotion that someone is feeling and might make them feel like they can’t share what they’re actually going through,” Lee says.

While it can be tempting to share stories and reassurance, Lee also recommends avoiding comparison.

“Every person’s cancer story is so unique; you could even be dealing with the same cancer as someone else and just have a very different experience,” she says. “Listen to the person in front of you, listen to their experience, ask questions about what they’re going through rather than trying to bring in your experiences.”

And what if you do say the wrong thing? Simply acknowledge it, apologize and move on.

Help without being asked

“Let me know if you need anything” can sound like a helpful way to support someone with cancer, but it can also create work.

“It puts the burden back on the person with cancer to determine what they need or ask for help,” Lee says.

While being mindful of your loved one’s wishes and boundaries, consider little ways to help. Lee says this might look like dropping off dinner, helping with cleaning or errands or delivering groceries.

“If you feel there’s something you can do to make things easier, go ahead and do it,” she says.

If you’ve learned that a friend or acquaintance you haven’t spoken to in a while has terminal cancer, you might be wondering whether it is OK to reach out.

“As long as you show genuine care and concern, and again, respect their wishes, I think that’s fine, and can often be very much appreciated,” Lee says.

Keep including them

It might feel like cancer changes everything, but it doesn’t need to alter the way you spend time with a loved one.

“Don’t assume that someone with terminal cancer doesn’t want to do something or won’t be willing or able to join a gathering,” Lee says.

Lee notes that cancer can feel very isolating and, while many times patients are met with lots of support right after their cancer diagnosis, that support may dwindle over time. She encourages loved ones to keep reaching out to a friend or family member with cancer, even if it means finding new ways to accommodate physical limitations.

This might look like playing games together online, gathering closer to a loved one’s home or simply continuing to extend invitations even if your loved one has had to miss events in the past.

Don’t be afraid to talk about difficult topics

Cancer can feel like the elephant in the room, but loved ones don’t need to pretend it doesn’t exist.

Instead, Lee says to let your loved one take the lead in determining what topics are off-limits.

“If a person is uncomfortable sharing or talking about certain things, or if they don’t want to, respect their wishes,” she says.

But if someone with terminal cancer is open to discussing a range of topics, it is OK to ask about health or even end-of-life plans. Lee says having these conversations, while difficult, can ensure you are accommodating a loved one’s wants and needs.

“It’s very critical to make sure we are honoring those wishes. And we can’t honor those wishes unless we know what they are,” she says. 

Remember to take care of yourself

Lee recommends caregivers find a support system outside of the loved one they are caring for so they can process their emotions. She also encourages caregivers to take small breaks, even if they are only mental rather than physical.

“There’s no need to feel guilty to take time away to do something that’s truly for you,” she says.

Caregivers can find self-care resources and community by joining MD Anderson support groups or connecting with someone else who’s been there through myCancerConnection, our one-on-one cancer support community.

Finally, Lee says that it is possible – and healthy – to experience happiness during a difficult experience.

“Sometimes we think when we’re grieving or when we’re caring for a loved one who is ill, we have to be sad all the time, and that’s just not true,” Lee says. “In a healthy grief experience, we do experience the full range of emotions, and our feelings often come like waves. It’s perfectly healthy and normal to feel joy and happiness also while we’re grieving.”

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Many Americans with dementia can’t get the hospice care they need

— Jimmy and Rosalynn Carter have drawn attention to the benefits of hospice care. But it’s not serving everyone well.

Former President Jimmy Carter holds hands with ex-first lady Rosalynn Carter in Plains, Georgia, on September 23, 2023.

By Keren Landman

Rosalynn Carter, whose unflagging advocacy for mental health reform and on behalf of human rights, democracy, and health programs redefined the role of a president’s wife, died on November 19 at age 96.

Half a year earlier, her family had shared publicly that Rosalynn had been diagnosed with dementia. She began receiving hospice care — i.e., end-of-life comfort care for patients and caregivers — at home in Plains, Georgia, two days before her death and died there peacefully.

Her husband, former President Jimmy Carter, also opted to receive hospice care nine months ago after multiple medical problems landed him in and out of the hospital. Although his family thought he was in his last days when he made the choice, he has surpassed expectations. “Rosalynn was my equal partner in everything I ever accomplished,” he said in a statement on the day of her death.

It’s not clear why the couple were in hospice care for such different durations. But in that difference are echoes of a nationwide phenomenon: The way hospice is paid for — and the way eligibility is determined — makes it a good fit for people with terminal illnesses with predictable end-of-life courses, like cancer. But for Americans with dementia, hospice care often becomes available much later in the illness than it’s needed — or is offered and then withdrawn repeatedly over the course of a long decline in health status.

To be clear, there’s no evidence this was Rosalynn Carter’s experience. But as both Carters’ end-of-life choices have drawn attention to hospice care and the value it can bring, it’s worth looking at who it works for, and who it doesn’t. The truth is that the US’s current hospice model doesn’t serve people with dementia as well as it could. Here’s why, and what could make it better.

Hospice care focuses on symptom relief and support for dying patients and their families

Many Americans hear “hospice” and think it’s equivalent to giving up.

In fact, hospice care is a type of medical care that centers a patient’s goals — and provides support to their caregivers — when they’re nearing the end of life. And as Jimmy Carter has so transparently shown us, the shift in care can be surprisingly nourishing.

In the US, the hospice approach and the mechanism to pay for it are two different things, explained Carolyn Clevenger, a professor and nurse practitioner who leads a dementia care clinic at Emory Healthcare in Atlanta. “There’s the hospice philosophy,” she said, and “there’s the hospice benefit.” This is what makes hospice care so different from other treatment approaches in the US: It not only prioritizes comfort over cure, but it also switches the patient over to a totally different insurance plan, often called the hospice benefit. (Medicare, Medicaid, and most private insurance plans have a hospice benefit.) As a result, all the care, supplies, and equipment a hospice organization provides its patients is generally fully paid for by the benefit.

The approach focuses on providing symptom relief rather than curative treatment. It generally includes a complete package of services to care for both the physical and emotional symptoms that come with nearing the end of life, and it provides support for both the patient and the family. A person in hospice care could get specialized medical equipment, such as a hospital bed, some home care, and in-home nurse visits. They and their families also benefit from social worker services, grief counseling, and spiritual services.

Hospice care reduces what insurers pay for care at the end of life. People in hospice typically don’t receive much pricey in-hospital care, so even though their insurer pays for a lot of other services, they ultimately save money. A study published earlier this year by NORC showed that for Medicare beneficiaries who got hospice care in their last year of life, Medicare spending was $3.5 billion less — more than 3 percent lower — than it was among those who didn’t.

But those cost savings don’t come at the expense of the patient’s well-being. In the same study, patients and families in hospice reported better quality of life and pain control, less physical and emotional distress, and less prolonged grief.

Lots of patients with longer life expectancies would benefit from hospice care, but can’t get it paid for

The hospice benefit makes important services available for seriously ill patients and their families. But to qualify for it, a person needs to have a life expectancy of less than six months. Where does that leave people who need the same services, but don’t have as grave a prognosis?

For people whose serious illness causes them a lot of symptoms and their caregivers a lot of strain, the broader field of palliative care — of which hospice is sort of a subset — can be extremely helpful, even when the life expectancy is relatively long. But in the US, the difference is that while palliative care can prescribe these services, it cannot generally pay for them the way the same services are paid for when they’re provided under hospice care.

In the US, there’s a stark difference between what regular insurance plans pay for and what hospice pays for. So unless they qualify for hospice, it’s hard for many Americans to get the full benefit of a comfort-oriented approach without breaking the bank. That’s complicated by the fact that doctors, patients, and caregivers often have a difficult time approaching conversations about the end of life.

The result of linking hospice access to a six-month prognosis leads to both overuse and underuse of the benefit, said Clevenger. Overuse comes into play when providers fudge a prognosis to get badly needed services that hospice provides for a patient who might not be terminally ill. Underuse happens among terminally ill people whose end-of-life planning has been delayed.

By the time they qualify for hospice, people with dementia look very different from people with other terminal illnesses

The six-month-or-less life expectancy that the hospice benefit hinges on looks different depending on what disease a person has. Broadly, it involves a combination of medical findings, declining function, and the absence of (or a patient’s refusal of) curative treatment.

What makes things particularly challenging for people with dementia is that it often progresses at a slower pace than other life-threatening conditions. By the time they get to the point where they qualify for hospice, they are much sicker than with other conditions, and their family is under much more strain than the families of others.

hat means “that person and that family’s experience is going to look very, very different from almost every other person who elects the benefit,” said Rory Farrand, vice president of palliative and advanced medicine at the National Hospice and Palliative Care Organization (NHPCO).

It’s a little easier to understand if you compare dementia with a condition like cancer. When a person with cancer runs out of curative options (like chemotherapy or radiation), health care providers can usually predict how many months they have to live within a reasonable margin of error. In many cases, people with the condition are still relatively functional at the time a provider tells them they have less than half a year to live.

It’s different for dementia, said Farrand. Dementia symptoms usually progress slowly, and there is no definitive treatment that cures it. According to the federal government’s criteria, to have a life expectancy of six months or less, people with dementia “basically have to be at a very, very, very, very advanced aspect of the illness — meaning that you are bedbound, you’re incontinent of bowel and bladder, a person has very few meaningful words,” said Farrand.< By that point, a person with dementia has likely been unable to function independently for a long time. Their caregivers — usually, their family — will have been bearing the strain of helping them dress, bathe, eat, and care for themselves for years. Additionally, the person has lost so much of their ability to make decisions that they can’t participate in their care. The services hospice provides are often really helpful to people with dementia and their families. In the last month of their lives, people with dementia in hospice care receive what their loved ones feel is better care, and experience less sadness or anxiety, compared with those not enrolled in hospice.

So while the care patients and families receive once they’re in hospice is helpful, it comes much later than it would need to if it were to really alleviate the immense caregiving burden that often comes with dementia.

Here’s what would better serve people with dementia and their families

Congress created Medicare’s hospice benefit in 1982. Since then, medical science has gotten better at preventing or treating a variety of diseases that commonly cause death in older adults, including cancer, heart disease, and lung disease. That means people are living longer — which means more of them are getting old enough to get dementia. If current population trends persist, more than 9 million Americans will have dementia by 2030, and 12 million by 2040.

Those people and their caregivers are going to need a lot of support, said Larry Atkins, chief policy officer at the National Partnership for Healthcare and Hospice Innovation. Unless people are insured by Medicaid, or have paid for long-term care insurance, they don’t have coverage for long-term care, he said.

Because it offers such supportive, wraparound care that provides for both the patient and the family, “hospice is the ideal care model,” said Atkins. But its requirement that eligibility hinge on a six-month prognosis means it’s unavailable to many of the people who would most benefit from it — including people with dementia.

Instead of relying on prognosis, said Atkins, hospice eligibility should depend on how sick a person is, how much help they need with daily activities, and how vulnerable they are to disease or death.

One way the US could make hospice’s benefits more available to people with dementia is by providing them under an expanded and more generously covered version of palliative care services — what Ben Marcantonio, NHPCO’s CEO, calls “community-based palliative care.” In this scenario, people would be able to access all of the good things hospice provides at whatever point their disease becomes burdensome to themselves and their families.

The Community-Based Palliative Care Act, a bipartisan bill introduced earlier this year, aims to make more of the services typical of hospice available to people who are still receiving curative treatment.

It’s worth noting that the US has tried this model, and it works: Several years ago, a handful of sites in the US trialed the Medicare Care Choices model, which allowed people to get hospice services while also receiving curative treatment, and it worked great — there was still plenty of cost savings, and high family and patient satisfaction.

Meanwhile, families can do some things to maximize the likelihood that the existing hospice benefit better serves them in the event of life-threatening illness, said Farrand. “Don’t be afraid of having conversations with your loved ones about what their wishes, goals, and values are as it pertains to their illness,” or how they’d want to live their lives if they were diagnosed with a serious illness.

And if they’re in the midst of a serious illness, they should ask for a palliative care consult, said Marcantonio. People sometimes misunderstand palliative care as “giving up,” said Farrand, but both palliative care and hospice involve “aggressively ensuring that your quality of life is what you want it to be — that you can live the best you can, even while living with a serious illness,” she said.

“If anything, it’s the absolute opposite of the idea of giving up.”

Complete Article ↪HERE↩!

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Physicians: Don’t Ignore Sexuality in Your Dying Patients

By Pebble Kranz, MD

I have a long history of being interested in conversations that others avoid. In medical school, I felt that we didn’t talk enough about death, so I organized a lecture series on end-of-life care for my fellow students. Now, as a sexual medicine specialist, I have other conversations from which many medical providers shy away. So, buckle up! Here’s a topic that rarely emerges in medical care: sexuality at the end of life.

A key question in palliative care is: How do you want to live the life you have left? Where does the wide range of human pleasures fit in? In her book The Pleasure Zone, sex therapist Stella Resnick describes eight kinds of pleasure:

  • pain relief
  • play, humor, movement, and sound
  • mental
  • emotional
  • sensual
  • spiritual
  • primal (just being)
  • sexual

At the end of life, both medically and culturally, we pay attention to many of these pleasures. But sexuality often is ignored.

Sexuality — which can be defined as the experience of oneself as a sexual being — may include how sex is experienced in relationships or with oneself, sexual orientation, body image, gender expression and identity, as well as sexual satisfaction and pleasure. People may have different priorities at different times regarding their sexuality; but sexuality is a key aspect of feeling fully alive and human across the lifespan. At the end of life, sexuality, sexual expression, and physical connection may play even more important roles than previously.

“I just want to be able to have sex with my husband again.”

Z was a 75-year-old woman who came to me for help with vaginal stenosis. Her cancer treatments were not going well. I asked her one of my typical questions: “What does sex mean to you?”

Sexual pleasure was “glue” — a critical way for her to connect with her sense of self and with her husband, a man of few words. She described transcendent experiences with partnered sex during her life. Finally, she explained, she was saddened by the idea of not experiencing that again before she died.

As medical providers, we don’t all need to be sex experts, but our patients should be able to have open and shame-free conversations with us about these issues at all stages of life. Up to 86% of palliative care patients want the chance to discuss their sexual concerns with a skilled clinician, and many consider this issue important to their psychological well-being. And yet, 91% reported that sexuality had not been addressed in their care.

In a Canadian study of 10 palliative care patients (and their partners), all but one felt that their medical providers should initiate conversations about sexuality and the effect of illness on sexual experience. They felt that this communication should be an integral component of care. The one person who disagreed said it was appropriate for clinicians to ask patients whether they wanted to talk about sexuality.

Complete Article ↪HERE↩!

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Celebrating Death As A Part Of Life

— Near Provides Ease For End Of Life Situations

Near’s platform aims to ease the “End Of Life” (EOL) for everyone involved, including caregivers.

By Kaitlyn Dang

Everyone dies eventually. So why is our culture generally avoidant about the topic of death?

It’s obviously not fun to think about the end of life, especially when discussing it with people close to you. According to this 2018 study, almost half of surveyed people aged 40-64 didn’t feel comfortable discussing death with their parents, with a third actually preferring to discuss their weight over the prospect of death.

People generally find death and dying difficult to speak about because it can be awkward, sad and, well, frightening. But death doesn’t have to be scary or weird to talk about, according to Near Co-Founders Christy Knutson and Jane Butler.

Created from all-too-familiar experiences with providing care for dying family and friends, Near is a Raleigh- and New York-based online services platform dedicated to uplifting care providers and providing resources focused on end of life (EOL). Their mission is to make EOL care and experiences easier and accessible for not only the dying person, but also the caregiver and close family/friends.

“I noticed that [life and grief companies] are one of the most neglected industries, partially because nobody wants to talk about [death],” Butler said. “But it can also be devastating, hard and difficult overall, even if you don’t want to talk about it. I thought there should be more of a platform to modernize it and help it be a little more applicable.”

The two founders met when Butler began working as a creative designer for Well Refined, a creative marketing agency serving nonprofits and startups that the Raleigh-based Knutson co-founded in 2011. While they were working with some EOL clients, they recognized gaps in care that occurred from the initial point of diagnosis to after death, according to Knutson. With her background in working with EOL organizations and Butler’s in creative web design, their passions aligned and led to conversations to create a modernized, easy-to-use platform for EOL resources.

Near Co-Founders Christy Knutson (L) and Jane Butler

At the time, Butler’s fiance (now husband) was diagnosed with a brain tumor, which she said was a wake-up call to the fragility of life. Knutson’s familiarity with EOL dates back to when she was 10 years old, taking care of her grandmother with Alzheimer’s. After experiencing her grandmother’s passing and then living through more significant losses—such as the loss of her cousin, whom she considered a sister—Knutson dedicated her work to ensuring ease, comfort, help and validation for people going through these difficult times.

“There are some losses you never get over and [my cousin] was that for me,” Knutson said. “She’s very much in my work, she’s a part of what I do. [Jane and I] were acutely aware of and exposed to all of the holes in support for both the person who’s ill and for their loved ones. And those experiences are really the driving force behind everything we’re doing with Near.”

What Near provides

Near is centered around three components: caring, connecting and celebrating.

The “care” aspect is complemented with a personalized care registry. Similar to a wedding or baby registry, users can register gifts and experiences that will help provide comfort and reassurance while they’re going through either the caretaking process or their own EOL. The startup just released its Holiday Gift Guide, which provides tangible and practical care to people experiencing hurt during the holiday season.

Through the care registry, not only can users ask for gifts, but they can also link to personal fundraising pages and delivery services, list close family members’ information and their specific needs and add care requests—like moving boxes or picking up kids from school—because no one wants to deal with all of that when they have to take care of a dying loved one.

The “connecting” aspect of Near offers a range of different services the user might need during an EOL process. They include meal support, legal services, EOL planning, funeral and memorial planning and more—all to ensure that no one should be alone through these difficult journeys.

Finally, Near’s “celebrating” component could redefine death as another milestone in a person’s life. It almost sounds like an oxymoron when you are looking to celebrate death, but why does the end of a life have to feel and look negative? Currently in development, Near plans to uplift and offer legacy and funeral/memorial planning services, which include but aren’t limited to personalized funeral programs and curated legacy memorabilia.

Near’s offerings are for both caregivers and those going through their final days

“When it comes to designing funerals, they’re often not designed with the same level of attention to detail and personalization that reflects the person who has died,” Knutson said. “We believe that there’s a real opportunity to actually celebrate the person who’s died in a way that aligns with their interest, their values, their aesthetics.”

They also hope to uplift and eventually provide resources on “living funerals,” which is the idea of having a celebration of life before an individual passes away. These provide an opportunity for the dying person to benefit from having the people that they love all together in one room and providing them with a real form of connection before they pass.

“A wedding pulls everyone you love together in one room and that does not happen again until you die,” Knutson said. “And you won’t be here to experience it. What an unnecessary miss.”

Near not only organizes services into one hub for the user, but they also find resources and providers through official communities and organizations who are dedicated to EOL care above all, so the user doesn’t have to scour through potentially unhelpful sources.

“We want [Near] to be the centralized place where you can be proactive in caring or celebrating the life of somebody else,” Butler said. “I want people to have more clarity during their difficult times—something I wish I had more of—or at least have the awareness of that.”

For Butler and Knutson, they hope that a service like Near can bring ease and comfort to a difficult time. They want people to know that they’re not alone in experiences of serious illness, end of life, loss and grief, and that there are services and tools to help bring the community together and help communicate needs and desires. They understand that because of our death-avoidant culture, it can be hard to break out of that shell.

“It’s hard for us to name out loud to the people we love what’s most important to us,” Knutson said. “Someone at the end of their life will feel isolated and lonely because they are having feelings about their mortality, but it’s difficult to talk about that with the people who are closest to them, because they don’t want to cause them any extra pain.”

She continues: “And it’s such a tender, sensitive time. We really want to surround people at this time of their lives and help them feel that sense of community and care. Even as a death-avoidant culture, we are seeing changes taking place. Over time, the more comfortable we can get talking about our own mortality and the end of life experiences with those we love, the more awareness and support there will be that is necessary.”

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Hospice Nurse Hadley Vlahos Has Seen Incredible Things from People Facing Death That Defy Medical Explanation.

— Here’s What It’s Taught Her About Life

By Stacey Lindsay

In her bestselling book The In-Between: Unforgettable Encounters during Life’s Final Moments, hospice nurse Hadley Vlahos writes the truth she sees in her job working with dying patients. “The one thing I can tell you for certain is that there are things that defy medical explanation and that in between here and whatever comes next, there is something powerful and peaceful.”

Alas, Vlahos still knows that “in between” and death are tricky topics. Death anxiety is real, she tells The Sunday Paper. But it is this angst that she hopes to dispel, both with her honest posts on social media (Vlahos has over 2 million followers on TikTok and Instagram combined) and in her book, in which she writes about all she’s witnessed and gained. As she says in a video post, “I found life again from caring for dying patients.”

Books on what those who are dying can teach us abound, and they share beautiful similarities in how we must grab the time we have and learn to embrace the beauty of passing on. Yet The In-Between is a book only Vlahos could write. In her captivating narrative, she layers between her accounts of people going to the other side, her own journey of facing poverty as a single mom, taking a chance in becoming a hospice nurse, and finding a Technicolor purpose—perhaps even more remarkable than she ever could have imagined.

A CONVERSATION WITH HADLEY VLAHOS
You write that people ask you about the subject of death often. What does this curiosity say to you?

I’ve been a hospice nurse for seven years now. And in the beginning, it was very hush, hush. You don’t talk about it. And I’ve noticed a huge cultural shift over the last two to three years since COVID, where people want to know. People realized how in the dark they were about what was going on, and they became hungry for knowledge. And it’s wonderful. Whenever you’re educated about something, it reduces the fear around it. I think everyone has that little bit of death anxiety, of course. Whenever we open up and talk about it, it makes it better.

You share these bone-chillingly incredible stories about things that happen to people as they are dying in hospice that, as you say, “defy medical explanation.” Many people connected with loved ones; in one story, Miss Glenda started talking to her deceased sister in the time leading up to her death. Tell us more about what you see.

We don’t learn in nursing school about people seeing deceased loved ones. So, whenever it first started happening, I thought it was a hallucination. Because that’s what I learned: People take medications, and then they hallucinate. And then I started talking to all my hospice coworkers and physicians, and I realized that they don’t believe that it is hallucinations. My first thought was maybe they’re all religious. But then I started being the one in control of my patients’ medication; I was the one who knew what they were taking and not taking. I would see the correlation between no change in medications, some patients not taking medications at all, and people with completely different religious backgrounds and diagnoses, and they were all having the exact same experience of their deceased loved ones coming to get them at the end. I started looking into it, wondering why this was happening and we don’t know why. There is no explanation as to why this happens and it is incredibly interesting to me.

There are a few different ones that happen. There is the seeing of deceased loved ones. There is also something called terminal lucidity, which is where people with dementia and Alzheimer’s will suddenly gain their memories at the end and be able to have conversations. I don’t witness it too much, but it is unbelievable to witness, and we don’t know why that happens either. The other one is what we call a surge of energy. That is where people at the end who have maybe been bed-bound for a while or have not been eating or talking much will suddenly be like, ‘I want to go into the living room and eat my ice cream and chat with my family.’ We don’t know why it happens, but it can sometimes give people a false sense of hope. And that is hard because loved ones will call me and say, ‘They’re doing so much better. I don’t even know if they need to be on hospice,’ when in reality, it usually means that they’re going to die very soon.

Going back to what we were talking about, whenever we educate people, they then know, oh, this could mean that my time is limited, and I need to enjoy this moment and take advantage of it.

This all sheds light on how we may force things on our loved ones who are dying, perhaps food or water, for instance, when they no longer need it. It is well-intentioned, but it speaks to a need for more understanding. What do you wish people who have a loved one who is dying knew?

I wish people knew that patients know that they’re dying. A lot of times, I watch this dance where someone is on hospice, or they’ve had terminal cancer for years, and no one wants to talk about it. Everyone wants to pretend that it’s not happening. What they think they’re doing is they are being kind by not saying, ‘I know you’re going to die one day,’ and not bringing up a difficult topic of conversation. But in reality, what I see with a lot of patients who confide in me is that they feel alone. They have all of these big feelings and thoughts and feel like they can’t talk to anyone about it because people change the subject. So I always tell family members, if your loved one brings it up, please talk to them and don’t try to change the subject. I know it’s uncomfortable. I know that the family members are trying to do the best thing, and they think they’re doing the right thing, but sometimes it leaves patients feeling alone.

You worked as a nurse in a traditional hospital setting before transitioning to hospice. How you speak of the hospice community paints a picture that it’s holistic and more harmonious. What things from the hospice world do you wish could be imbued in the medical world?

I have been what is called a case manager. If you’re in hospice, you have a registered nurse case manager. That means that I had patients assigned to me that were my responsibility. So, if a physician wanted something, the doctor had to come through me. If the chaplain wanted something, he had to come through me. If anyone wanted anything, they would have to come through me. I know not only what medications my patients take but also what prayers they’re saying with the chaplain and what conversations they’re having with the social workers. That kept things very cohesive.

A lot of patients tell me, and I’ve seen this from my own experiences, that it can feel like your cardiologist is telling you to do one thing and another doctor is telling you to do the opposite. No one in there’s saying ‘Okay, the cardiologist said this, let me call them.” Because so often, patients don’t know how to have the medical conversations that need to be had. There needs to be that one person. Right now, the only case managers we have in the hospital-type setting work for insurance companies, and that can be a gray area, as they’re usually on the phone and not caring for the patient and laying hands on the patient. So, I think other areas of medicine could learn from that approach, making it holistic.

You’ve said many times how positive of an experience death has been for so many of your patients. What can that teach us about life?

It can really teach us how to live a good life. Truly. I think that whenever we recognize that our life is short, and that’s such a cliche statement, but whenever we realize that, Okay, one day, I’m going to be on my deathbed. I see my patients, and I think, ‘That’s going to be me one day.’ So am I doing what I want to do every day so that when I’m in this position one day, I don’t have regrets? Or I can look back and do my life review with my own nurse and be like, ‘Yeah, I really went for it. Maybe I failed a little bit, but I really went for it. I really lived life.’ I think that that’s a really beautiful thing to be able to do.

When it comes to life wisdom, regrets, and looking back, what are some things you’ve heard from people as they pass on?

They tell me a lot! ‘Eat the cake,’ which I put in my book, is one of my favorites. I think about it all the time. But one thing that people have told me a lot, which I surmised from all of them, is that they lived for other people instead of themselves. That can mean a bunch of different things. That could be buying a new car because the person on the street has a new car. That could be choosing a career because that’s what your parents or society expected of you. Those are the regrets I’ll hear: They wish they would have just lived for themselves instead of others. Whenever I first heard ‘Don’t try to keep up with the Joneses,’ as someone said to me, I first thought the best way to live is to have no possessions and live a very low-key lifestyle. But as I started talking to more people, I realized it was more about: If you buy this house, is it because you love the house and you love coming home to this house every day? Does it make you happy? Or if you’re really into cars, does that car bring you joy? So I’ve realized that ‘Keeping Up with the Joneses’ means buying stuff for other people, not yourself.

What is the “in-between”?

It has a few different meanings. The main one is that I feel I’m with patients in between this world and whatever comes next. We get that little window of patients between worlds, and they seem to go back and forth. It’s my favorite period of time. I love being part of it.

On a more personal life side, the in-between for me was getting comfortable in the uncomfortable and being able to say, ‘Maybe I don’t have the answers, or maybe my life isn’t exactly how I want it to be, but I’m still finding happiness in this in-between phase.

Your book has been wildly successful. What did you hope people would take away as you wrote it? And what has surprised you now that it’s in so many people’s hands and ears?

I hoped that people would have less death anxiety. Whenever we turn on the TV, we see this tragedy—all the time. There was just a study that came out about how 80 percent of what we’re shown is just traumatic deaths. And I’m aware that that is not the reality for the majority of people. So, I was hoping that people would understand that you’re likely going to die in a slower way. And I think that that helps with people’s death anxiety. That was always my goal.

I was very shocked just how much people loved it. And I was very shocked at how much people related to me on a personal level. I was nervous. I quite literally wrote whatever my thought was. I put myself back in that moment in time, and whatever my thought was, whatever I was thinking, I just wrote. It was extremely honest, and I was a little bit nervous about it. I have been shocked by the messages, handwritten letters, and people just saying, ‘Thank you. I’m really glad to see someone else go through these things.’

And then how many ‘Eat the Cake’ tattoos! I think I’m up to 17 tattoos that I’ve seen. I love them so much!

Hadley Vlahos is a registered nurse specializing in hospice and pallative care. She is known as “Nurse Hadley” to her over two million followers online. Her first book, The In-Between: Unforgettable Encounters During Life’s Final Moments, is a New York Times bestseller. Learn more at nursehadley.com.

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A Guide to Dying

— We Talked to 3 Death Doulas

As Halloween, Day of the Dead, and All Souls and Saints Day have passed, we reflect on death and the afterlife. In fact, it’s all consuming. It’s impossible to not think of our loved ones we have lost or those we may lose when visiting grave sites or setting up an altar with candles.

By Penny Min

Whether religion comes into the conversation or not, death is a complex topic to discuss. The dying process is a mystery for most people, and shielding away from “the end” is an uncomfortable reality that many aren’t ready to face. Oftentimes, most people ignore it alltogether.

Avoidance, however, doesn’t always work when it comes to the inevitable — preparing for one’s departure from the world. And sometimes, people just need a little help, guidance, and comfort to ease into this next transition.

That’s why having a death doula assist during the latter stages of life is increasingly becoming a popular business and option for those heading toward the light.

A “doula” is a term commonly employed to describe someone who supports a pregnant woman during childbirth. The name is derived from the Greek word “doulđ,” which means “slave or female servant.” More recently, the definition of a doula has been expanded beyond the introduction to life and includes someone who provides support to those who are nearing the end of their lives.

What does a death doula do?

The tasks performed by death doulas can change depending on the needs of the person they are currently assisting. A death doula may concentrate on performing menial duties so that others who are close to the dying person can concentrate on spending meaningful time with them. They may assist with funeral rites and ceremonies, such as ensuring that the proper cultural or religious customs are observed during the dying process and that the deceased’s body is appropriately handled after death.

Listening to the dying person and others close to them while providing nonjudgmental emotional and spiritual support can be a significant portion of the death doula’s job description.

To learn more about this compassionate role, we asked three death doulas about their difficult but rewarding profession.

Interview questions have been edited for length.

Alysha Suryah, Baltimore

Photo by Elizabeth Kopylova

Q: What kind of training goes into being a death doula?

A: While end-of-life doulas have been around for years, the process for entering this space as a professional is somewhat unregulated. There are a plethora of opportunities to get out in the community to receive training in specialized topics, like rituals and communication, as well as the business side of this role; however, certifications are not required to provide this level of care to clients or even within your community — there are even opportunities to be a volunteer doula at hospice centers or other related organizations.

The only thing needed to be a doula is a willingness to provide compassionate care and a deep commitment to supporting individuals and their families during this potentially life-changing journey. It’s really a role rooted in humanity, and while formal training and certifications can certainly enhance your skills, the essence of being a death doula is the unwavering dedication to being there for others when they need it most.

Q: What are some of the challenges of the job?

A: One of the primary challenges of this role is the emotional toll it can take, even if one is vigilant about protecting their emotional well-being. Death is an intensely personal experience for everyone, and as an end-of-life doula, you have the potential to build deep, meaningful relationships with the individuals you serve. Bearing witness to their grief, pain, and loss, as well as the grief of their families following their passing, can be emotionally taxing at times. Sometimes, the relationships formed with clients are so close that you find yourself sharing in their sense of loss. It necessitates practitioners to have a considerable amount of mental fortitude to provide unwaveringly compassionate care consistently.

In addition to the emotional challenges, end-of-life doulas also encounter practical challenges. Effective communication, including facilitating difficult conversations, is a key aspect of the role. Irregular hours, often involving evenings and weekends, demand flexibility. Additionally, managing multiple clients simultaneously can increase the risk of burnout, emphasizing the need for self-care and support. Balancing the emotional demands and the practical challenges of the role, end-of-life doulas exemplify resilience in their commitment to providing support while navigating the complexities of end-of-life journeys.

Q: Is a death doula brought into hospice, or is it home care?

A: The professional role of a death doula is remarkably diverse, shaped by an individual’s strengths, experiences, interests, and the specific needs of their community. Death doulas can be found in both hospice and home care settings, and their responsibilities closely align.

In hospice settings, death doulas collaborate closely with hospice teams to provide comprehensive support to patients and their families. Their mission typically involves offering emotional support and guidance, contributing to legacy projects, and assisting individuals throughout the end-of-life journey. Their role seamlessly integrates within the hospice care framework. Conversely, some death doulas choose to operate within the context of home care. In this capacity, they provide support to individuals who have decided to receive end-of-life care in the comfort of their homes. Within this environment, death doulas can have a higher degree of flexibility compared to the structured relationships found in hospice settings. Their services encompass companionship, emotional and/or practical support, as well as guidance and education on end-of-life decisions. They also continue to provide support to clients’ families, guiding them through the dying process in a familiar environment.

Catherine Durkin Robinson, Chicago

Photo courtesy of Catherine Durkin Robinson

Q: What led you to become a death doula?

A: I’ve been doing death doula work for a long time. Raised Irish Catholic, I was at my first “Last Rites” when I was five, and thought everyone was raised to believe that death is a natural part of life. I was much older when I realized that most of my friends were shielded from death and quite frightened by it. So I’d been their “death buddy” for years. I was also a longtime volunteer for two hospice organizations. It was around the time of the pandemic when I realized my 30-year career as a political organizer was coming to an end. I wanted to continue advocating for people outside the political system (it’s gotten quite toxic out there.) Someone said that I was already doing this work, so I went back to school (University of Vermont) and opened up my practice.

Q: What are some of the biggest challenges in your line of work?

A: I think one of my biggest challenges is helping people to see death in a different light. We can be awed by its mystery rather than frightened by it. Another challenge is helping people understand that plant medicine, or psychedelics, can reduce anxiety and fear around end-of-life. People are afraid of that idea, too. So, I’m pioneering in this space and need to remember that and be patient as I go.

Q: I’m interested in your experience in the polyamorous space. Can you discuss this?

A: Yes, there are lots of challenges about the end of life for different families. This is especially true for non-traditional families, like polyamorous or anyone on the LGBTQ+ spectrum. As someone with training and lived experience in this realm, I’m happy to advocate for families and help healthcare providers to better support them when needed.

Laura Lyster-Mensh, Washington D.C.

Photo by Isabella Carr

Q: How long have you been assisting others as a death doula?

A: I have always been interested in the processes of birth and death. At my stage of life, there is more death, and I wanted to explore how to be a better caregiver, supporter, and mourner.

I started my training in late 2021 and have been volunteering with dying people and doing death awareness work since early 2022.

Q: How has becoming a death doula changed your perspective on death and dying?

A: I’m less afraid of dying. I am able now to separate dying from death, and that is quite helpful.

Q: Can you tell me about the death positivity programming at the Congressional Cemetery, where you are a death doula?

A: Congressional Cemetery is taking a bold and active stance on this programming. Despite a very busy calendar with so many activities going on, they make space for these special events and gatherings. It’s innovative, and the community of death-positive participants is growing and supporting one another. It’s an honor to be facilitating these programs.

People stop me, often, when I’m walking around the cemetery and say, “Aren’t you the death doula?” These are the start of some of the most interesting and enriching conversations I’ve ever had. It is amazing how much people want to talk but don’t know where to start.

  1. Professional Care Management. End-of-Life Doulas.

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Your Partner Was Diagnosed With Dementia

— What Now?

Dementia can be a devastating diagnosis, but there are steps you can take to plan ahead and care for your partner. Learn about the early warning signs of dementia, what to do if you suspect a diagnosis, and how to create a legal, financial and end-of-life plan.

By

Maybe you knew there was a possibility that it could happen. Maybe your partner’s mother or father had dementia, and maybe even their siblings, so you were watching for the signs. Or, maybe, it came out of the blue, and you never thought that dementia would ever impact you or your family. 

When you start to notice changes in memory, behavior and judgment that are not normal with your partner, it gives you a sinking feeling, whether you may have been expecting it or not.

Warning Signs of Dementia

According to the Alzheimer’s Association, there are 10 early warning signs of Alzheimer’s and Dementia that you can be watching for:

1. Memory Loss That Disrupts Daily Life

Forgetting recently learned information, forgetting important dates or events, asking the same questions repeatedly and increasingly needing to rely on memory aids or family and friends for things they used to handle on their own are all signs.

2. Challenges in Planning or Solving Problems

This may involve changes in the ability to follow a plan or work with numbers. For instance, they may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and/or taking longer to do things than they did before.

3. Difficulty Completing Familiar Tasks

Examples include having trouble driving to a familiar location, organizing a grocery list or remembering the rules of a favorite game.

4. Confusion With Time or Place

This may involve losing track of dates, seasons or the passage of time, trouble understanding something if it is not happening immediately and possibly forgetting where they are or how they got there.

5. Trouble Understanding Visual Images and Spatial Relationships

Some people experience vision changes that may lead to difficulty with balance or trouble reading. This may also lead to difficulty judging distance and determining color or contrast, causing issues with driving.

6. New Problems With Words in Speaking or Writing

This often presents as difficulty following or joining a conversation. They may stop during a conversation and have no idea how to continue or repeat themselves. Moreover, they may simply struggle to find the right words.

7. Misplacing Things and Losing the Ability To Retrace Steps

They may put things in unusual places, lose things and be unable to go back over their steps to find them again or accuse others of stealing, especially as the disease progresses.

8. Decreased or Poor Judgment

Experience in changes in judgment or decision-making. For example, when dealing with money or keeping themselves clean.

9. Withdrawal From Work or Social Activities

Because of the changes in the ability to hold or follow a conversation, many people experiencing changes due to dementia may withdraw from hobbies, social activities or other engagements.

10. Changes in Mood and Personality

This shows up as being confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, with friends or when out of their comfort zone.

If You Suspect Your Partner Has Dementia…

Don’t ignore the signs. Schedule an appointment with your partner’s primary care physician immediately to seek a diagnosis and take the next steps.

If there is a dementia diagnosis, you are likely completely overwhelmed. Your world has been turned upside down and it is likely hard to think beyond each day at a time, let alone the next month or year. However, taking steps to plan ahead can help things go more smoothly for you and your entire family. 

As the disease progresses, things are likely to only become more hectic, making it even more difficult to think clearly. Getting your legal, financial and end-of-life planning finalized early on will make it easier for you to make the appropriate decisions needed and to communicate those decisions to the right people before things get even harder.

Legal

Make sure your partner has updated legal documents in place (if they don’t already) before they are designated as being unable to make those designations/decisions for themselves due to their new diagnosis.

  • Patient Advocate/Health Care Durable Power of Attorney: This names someone as a “proxy” to make medical decisions for someone when they are not able to.
  • Living Will: This informs medical professionals of how one wants to be treated at the end of life (dying, permanently unconscious, etc.) and cannot make decisions on their own.
  • A Do Not Intubate, or DNI, order: This lets medical staff know someone does not want to be put on a breathing machine.
  • A Do Not Resuscitate, or DNR, order: This lets medical staff know not to perform CPR or other life-saving procedures in case the heart or breathing stops.
  • General Durable Power of Attorney: This names someone as a “proxy” to make financial decisions and handle financial transactions for someone when they are not able to.
  • Will: This names someone to be the executor to handle their estate after they are deceased.
  • Trust: For some, a Revocable or Irrevocable Trust naming someone to handle assets on their behalf and for their benefit either during their lifetime or after death is appropriate.

Financial Planning

It is important to work with your financial adviser to make sure fiscal affairs are in order for several reasons:

  • Make sure that all of your financial records are accounted for by using a Personal Recording Keeping document. Keep it stored in a safe place before that information is lost or forgotten by either or both partners.
  • Work with your financial adviser to make sure you have planned well to provide for your financial future, including your now more certain long-term care needs including dementia care.
  • Make sure assets are positioned and titled properly to assist with future long-term care needs and any future resources and assistance that may be needed.
  • Research any insurances you may currently hold to make sure you understand how they may be used for future long-term care needs.
  • Talk about how you might want to handle future care needs for your partner with dementia. If that includes you, as the healthy spouse, taking time from work (if you are not yet retired), plan for how you will handle that financially. Planning ahead for how care will be funded, if needed, is a key piece of future planning.
  • Research community and professional resources in your area. Put together a team to help you when needed.
  • Communicate your future plan to your family so that they can help you execute it when things are more hectic and the disease is more difficult to deal with.

End-Of-Life

There is currently no cure for Alzheimer’s disease or any other dementia. Some treatments, though, can manage some of the symptoms for a time. 

However, a person who has been diagnosed will gradually decline and the condition itself (or combined with additional health problems) will eventually result in death. For that reason, it is also important to plan ahead and make decisions for end-of-life early on. 

Making sure the important legal documents are in place is the first step. Communicating preferences for end-of-life to important family members is the second step. If there are any preferences for end-of-life services, that should be documented. Using a Letter of Last instruction document is a good idea.

When your partner is diagnosed with dementia, it can be a shock. For many, it can be so overwhelming that it can be hard to breathe, let alone get your head around doing anything. But once the numbness wears off, lean on your financial adviser and professional team of advisers to get a plan in place so that the legal, financial and end-of-life pieces are in order so that you can concentrate on caring for your partner and their ongoing needs.

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