Alicia Mathlin felt like her body was no longer hers after several rounds of debilitating cancer treatment — so she decided to stop and focus on living her life. Matt Galloway talks to Mathlin about that decision and asks medical experts about the push for ‘common-sense oncology,’ which weighs the pros and cons of certain treatments against a patient’s quality of life.
Matt Galloway cuts through a sea of choice to bring you stories that transcend the news cycle and expand your worldview. It’s a meeting place of perspectives with a fresh take on issues that affect Canadians today.
There are few as well acquainted with the dying, and their regrets, as death doulas. Also known as end-of-life doulas, they provide support to people through terminal or life-limiting illnesses by improving their quality of life, and death.
This encompasses everything from helping with logistics to providing emotional support to those at the end of life and their loved ones.
i spoke to three death doulas to understand the biggest regrets of the dying, the living who love them, and steps we could take to avoid those same regrets and have a better end of life.
Staying in unhappy (and sexless) relationships
Emma Clare, who is a chartered psychologist and death doula, says that the most common, though unspoken, regret she hears is about relationships.
“I often hear people say that they wish they’d left either unfulfilling or unhappy relationships sooner. A lot of people have regrets about spending a large part of their life in situations that didn’t feel true to themselves or have any fulfilment.”
She says when we’re confronting death, we feel a lack of intimacy and closeness acutely – including sexual intimacy.
“As humans we look for intimacy and that doesn’t go away because we’re dying. If anything, it increases because people are aware they have a limited time left and they want to have that connection with other people.”
Not downsizing or decluttering
“We all know we’re going to die, but we just put it to the side, even with a terminal diagnosis,” says Jane Depledge, a doula based in North Powys, Wales. When patients are told that treatment is going to stop, that lack of preparation “hits them”, she says. Getting a will in place, transferring over health insurance, or discussing their wishes are all simple things that we don’t want to face, but will feel better for it.
Emma Clare adds that this includes very practical decisions.
“People wish they’d downsized their home earlier and cleared out their stuff, and now they’re aware their often adult children are going to have to deal with that and feel a big sense of guilt. That means regret from the family too: they’re then left sorting that out and haven’t had the conversation about what was and wasn’t treasured and should be kept.”
Being in hospital instead of at home
“People often don’t realise they have choices”, says Depledge, so when a person is dying they panic and send them to hospital. Though for some people hospital care is essential, she says it is always worth asking and looking into ways their loved one could die at home.
Not being prepared
The emotional and physical burden of caring for someone at the end of life can take its toll on both the carer and the patient, who may feel huge guilt at being ‘a burden’. People often regret being inadequately prepared for everything that needs juggling, and not realising what support they can get.
“Carers can claim immediate Government grants to care for someone who is dying,” explains Depledge. “Knowing that could have enabled someone to take time off work or give up work to care for and be with a loved one.”
Not being able to say goodbye to friends
When a person is dying, they tend to want to surround themself with the things and people they love most – but so often, they are lonely, says Depledge.
“I think a lot of people avoid visiting people when they get a terminal diagnosis because they worry they don’t know what to say,” she explains. “But actually I hear a lot of upset from the people who are dying, saying that they feel like their friends have gone quiet or disappeared and they feel very lonely. And that’s needlessly lonely because at the funeral there are lots of people there.”
Not saying how you really felt
Amanda Waring, a death doula working in West Sussex says that the biggest regret she comes across is from people who feel they didn’t “heal their relationship, or speak frankly”.
“Regret stems from a lack of honesty. This is true even for exceptionally difficult conversations where someone has wronged the other and the only catharsis is if you bring it into the open and it takes a lot of courage.”
She says this can range from apologising for harsh words spoken at a bedside, to being honest about deeper rooted, historical conflicts, to sharing feelings of love and pride that were perhaps not made clear before.
“Bravely speaking up and trusting your gut is the key to avoiding all regrets really,” adds Emma Clare.
Hope is defined as the expectation of achieving a future good. Patients with cancer, whether it is curable or not, prioritize cure as their highest hope.
Patients with incurable cancer wish to be informed about their disease and its treatment, but also need to maintain hope. This inner conflict can impact how they process information about their prognosis.
Prognostic awareness
Physicians are ethically obligated to inform patients about their prognosis so that patients can make cancer treatment decisions that are consistent with their values. When oncologists talk to patients about prognosis, they tend to talk about the extent of the disease (localized or metastatic), the goal of the treatment (curative or palliative) and the estimated survival (short months or many years).
Communication about prognosis can be challenging due to physician factors such as skill in discussing bad news, and patient factors such as denial. Some patients with incurable cancer, who are aware of their prognosis but haven’t accepted it, will say the treatment goal is cure.
Previous research indicates that less than half of patients with incurable cancer are aware of their prognosis. This is often attributed to a failure of communication.
But are patients truly unaware, or are they aware and not accepting of their prognosis? If inaccurate prognostic awareness is due to denial in spite of adequate communication from the oncologist, then interventions to improve communication may be ineffective, misguided or even harmful.
Patients with incurable cancer are more likely to receive end-of-life care concordant with their preferences when they have accurate prognostic awareness. Inaccurate prognostic awareness can lead to conflicting treatment decision-making between patients and oncologists, delayed referral to palliative care and more aggressive care at the end of life.
In a study of patients with advanced lung cancer, those who received early palliative care and had accurate prognostic awareness were more likely not to choose intravenous chemotherapy in the last two months of life, which would have been futile and worsened the quality of their end-of-life care.
How prognostic awareness is measured
Measuring prognostic awareness in patients is challenging because their responses may reflect their hopes rather than their true beliefs. In a recent publication in the Journal of the National Cancer Institute, our research team synthesized data from 52 studies measuring prognostic awareness in patients with advanced cancer.
In the majority of studies, prognostic awareness was conceptualized as a binary entity: patients were asked if their cancer was curable, and their responses were coded as either accurate prognostic awareness (patients knew their cancer was incurable and responded that it was incurable) or inaccurate prognostic awareness (they thought it was curable and responded that it was curable).
A few studies included in our review improved upon the binary conceptualization by incorporating hope in the assessment of prognostic awareness.
These studies asked patients about their belief and their doctor’s belief about prognosis and found that about a third of patients will hold onto hope for a cure (responding that they believe their cancer is curable), even when acknowledging that their doctors were treating them with palliative intent. This discordance was attributed to poor coping.
The role of hope
Hope is a recognized coping strategy in patients with cancer. However, “false” hope may have detrimental effects. Patients may refuse to believe their prognosis and demand aggressive treatments that may cause more harm than benefit.
In the context of advanced cancer, the relationship between hope and hopelessness is balanced by acceptance, which can re-direct hope to new goals beyond cure, such as hope for connection with others and enjoyment of daily pleasures.
Nurturing hope among patients with cancer and their caregivers is possible and includes coping strategies focusing on what can be done (such as control of symptoms) and exploring realistic goals such as dignity and intimacy. Family and spirituality play an important role in supporting patient hope.
Incorporating patient hope into prognostic awareness
We improved upon the binary conceptualization of measuring prognostic awareness by incorporating patient hope, creating a trinary concept: patients who are aware and accepting of their prognosis; aware and not accepting; or truly unaware.
We propose that patients who are aware and accepting should be offered psychological supports to address any negative effects on mood; those who are aware and not accepting should be offered adaptive coping strategies to support their evolving prognostic awareness; and those who are truly unaware will benefit from interventions such as decision-aids and communication training. Early palliative care consultation may be beneficial at each stage of prognostic awareness.
This trinary conceptualization may guide future research to improve our understanding of the impact of hope in the setting of serious illness and help patients receive the right supports in their cancer journey.
Navigating the later phases of a loved one’s life may be an extremely emotional and difficult experience. During these difficult times, hospice home care arises as a source of comfort and support, providing a compassionate alternative to typical hospital medical treatment. This specialist care focuses on improving the quality of life for those in the final stages of a terminal illness by giving them the dignity, respect, and peace they deserve at home.
The Essentials of Hospice Home Care
Hospice home care exemplifies a compassionate approach to end-of-life care, providing a beacon of comfort and dignity to those in their final stages of life. Unlike traditional medical treatments geared at curing diseases, hospice care focuses on quality of life, providing comfort and support to both patients and their families. This comprehensive care paradigm is holistic, addressing patients’ psychological, social, and spiritual needs as well as the physical symptoms of their sickness.
At the heart of hospice home care is the dedication to respecting a patient’s choices, allowing them to spend their final days surrounded by loved ones in the familiar comfort of their own home. Pain treatment is an important part of this therapeutic method. Expertly trained healthcare experts work diligently to manage symptoms and reduce discomfort, allowing patients to live as fully and comfortably as possible.
Beyond physical care, hospice home care offers emotional and psychological assistance. Hospice staff provide counseling and grief assistance because they understand that patients and their families are going through one of the most difficult times of their lives. This guarantees that families are not alone in their journey, giving them a shoulder to lean on both during and after the patient’s life.
Spiritual care is also an important component of hospice home care, allowing patients and their families to examine life’s core concerns, make peace with unresolved issues, and, if applicable, strengthen their spiritual connections. This component of treatment is tailored to the individual’s beliefs and desires, with the goal of providing peace and meaning to patients and their loved ones during this momentous life experience.
Hospice care teams are multidisciplinary, made up of doctors, nurses, social workers, chaplains, therapists, and trained volunteers. Each member contributes their knowledge to build a support network that surrounds the patient and their family with care, love, and understanding. This multidisciplinary approach assures that every imaginable need—whether physical, emotional, or spiritual—is met.
In essence, hospice home care represents a paradigm shift in how we see the end of life. It is about appreciating the importance of every minute and allowing patients to spend time with loved ones, reflect on their life, and transition quietly. Hospice home care helps to reimagine the final chapter of life as one of love, respect, and compassion, rather than despair.
Who Can Benefit from Hospice Home Care?
Hospice care is designed for patients who are facing the end stages of a terminal illness, with a life expectancy of six months or less if the disease follows its usual course. However, it’s not just for the patients; hospice care also significantly benefits the families and caregivers by providing them with educational resources, emotional support, and respite care, helping them navigate through their grief and the caregiving process.
The Core Services Offered
The hospice care team typically includes doctors, nurses, social workers, spiritual advisors, counselors, and trained volunteers. They work together to tailor a care plan that meets the individual needs of each patient and family, which can include:
Pain and symptom management: Focusing on alleviating symptoms and ensuring the patient’s comfort.
Emotional and psychological support: Addressing the emotional, psychological, and spiritual needs of patients and their families.
Companionship and daily care assistance: Helping with daily activities and providing companionship to reduce feelings of isolation and anxiety.
Bereavement support: Offering grief counseling and support groups for families before and after their loved one’s passing.
How to Choose a Hospice Home Care Provider
Selecting the right hospice care provider is crucial. It involves considering factors such as the provider’s reputation, the quality of care, the availability of services, and the level of communication and support offered to families. It’s important to meet with several providers, ask questions, and choose one that aligns with the patient’s needs and family values.
The Impact of Hospice Home Care
The importance of hospice home care to patients and their families cannot be emphasized. This approach to end-of-life care has a significant impact on the quality of patients’ final days because it allows them to remain in the familiar and pleasant environment of their own homes. The environment has a significant impact on a person’s well-being, particularly throughout the final stages of life. Being at home rather than in a hospital allows patients to be surrounded by personal memories, things, and the people they care about, which can considerably reduce the emotional load of facing a terminal illness.
Hospice services provide patients with specialized care that addresses their physical, emotional, and spiritual needs. Pain and symptom control are prioritized to allow patients to interact with their relatives and enjoy their remaining time as comfortably as possible. This level of care empowers patients by offering them a sense of control over their lives and the dignity to choose their own treatment and how they want to spend their final days.
Navigating End-of-Life Care with Compassion and Dignity
Families benefit greatly from the extensive support that hospice home care offers. Going through a loved one’s end-of-life process can be emotionally and physically draining. Hospice care teams do more than just attend to the patient; they also assist families with counseling, respite care, and information about what to expect. This assistance is crucial in guiding families through the complexity of sorrow, loss, and the practical aspects of caring. It also allows the family to focus on being present with their loved one rather than being distracted by caregiving or decision-making.
Hospice home care provides significant support to families, which benefits them greatly. Going through a loved one’s end-of-life care can be both emotionally and physically taxing. Hospice care teams do more than just look after the patient; they also provide families with counseling, respite care, and information on what to expect. This help is critical in guiding families through the complexities of grief, loss, and the practical responsibilities of caregiving. It also enables the family to concentrate on being with their loved one rather than being distracted by caregiving or decision-making.
Component of hospice care cannot be overlooked. Families often find themselves in uncharted territory when a loved one enters hospice care. The hospice team’s role in educating families about what to expect, how to manage symptoms, and how to cope with grief is an essential service that can demystify the dying process and alleviate fears.
In essence, hospice home care profoundly impacts both patients and their families by providing a holistic approach to end-of-life care. It ensures that patients can live their final days with dignity and comfort, surrounded by love, while offering families the support, education, and guidance needed to navigate this challenging journey with grace. This model of care not only addresses the physical symptoms of the patient but also nurtures the emotional and spiritual well-being of everyone involved, making the inevitable transition a shared, supported, and deeply human experience.
Hospice home care displays the power of compassion and dignity in the face of life’s most challenging challenges. Hospice care focuses on comfort and quality of life, guiding patients and families through the end-of-life process with dignity and support. If you or a loved one are considering hospice care, remember that it is a decision that prioritizes love, dignity, and comfort during the most difficult times.
I am dying from prostate cancer that has spread to my bones.
But it’s comforting to know that I will likely soon die gently because I plan to use a medical aid-in-dying law championed by civil rights icon Dolores Huerta.
Thanks to the California End of Life Option Act, I will soon have the option to take a medication prescribed by my doctor that will allow me to die peacefully.
While I understand why my doctor wanted me to undergo more treatments, at this point in the rapid progression of the disease, the costs outweigh the benefits for me. Doctors should consult with patients about their care, not dictate it. Only I can determine how much suffering I can endure.
I suspect this disparity is because we have unequal access to this end-of-life care option because of healthcare system bias, cultural differences, and/or language barriers. I am a low-income body shop mechanic who does not speak English. My family doesn’t even have money for my burial.
In December 2023, three months after trying to start the conversation about medical aid in dying with my healthcare team and after I had already endured numerous rounds of treatment since my diagnosis in 2018, I told my doctor:
“I don’t want any more treatment, I want you to respect my decision and I want you to help me. I’m asking that you declare me at the end stage because you’re the one who knows the treatment isn’t working for me anymore.”
I repeatedly asked my oncologist to estimate how long I have to live.
She declined to give me a prognosis. I showed my doctors a web page about this end-of-life care option to prompt the conversation with them.
They responded, “No, not yet…Keep taking more chemo.”
‘I Have Options’
I kept telling my doctors: “I have options.”
Why did my doctors not advise me about my healthcare options at the end of life, including my right to decline medical treatment for this incurable illness?
Hospice
For five years, I endured treatments to try to cure the cancer so I could work to provide for my two children and enjoy life.
Not anymore.
Last week [March 10], my doctors finally placed me in hospice care that focuses on alleviating some of the pain.
I am tired. I am weak. I have had a fever and convulsions for days. My frail and thin body can no longer withstand more than just a few steps.
Suffering is like being tortured.
Cancer consumes you little by little.
Unfortunately, the hospice care I am getting does not significantly reduce my suffering, so I will soon get the medication that will relieve me of this pain so I can die in peace.
I have spoken to God and asked Him to forgive my sins throughout my life.
I was out today in the early morning walking with a close friend of 64 years named Shelley Adams. Despite some huge losses over time, she is always overtly positive. I don’t normally like this in a person. I make a rare exception for her. We hike several times a week beside our local creek, now a twisting, flowing stream that rushes over rocks, mint and twigs.
Rainer Maria Rilke was only partially right when he wrote that “life holds you in its hands and will not let you fall,” because both Shelley and I, like all older people, have been dropped. But life also at some point pulls you back to your feet. What do you do in between, during times of loss or general dread? My friend Tom Weston, a Jesuit priest, always reminds me, “We do what’s possible.” I hate that.
Okay, fine: What is possible? The practical, simple and kind. We work, love and help others as best we can, gawk at nature, rest. Is that it? Pretty much.
This is a little disappointing, but age teaches us that kind, simple and practical are enough, even in the face of the worst things we’ve lived through: suicides, mental illness, odious leaders, sudden death. My friend Don was called one day by an aging and suicidal friend. His friend asked, “What is the point of it all?” After a moment, Don replied gently, “Mornings are nice.” And, wildly, it was enough. His friend improved.
I cannot hike the uphill trails here anymore because of my hip, so we do what’s possible: take four 10-minute laps back and forth along the creek. Everything that is true about aging appears to me on these walks.
On our first lap, Shelley and I catch up. We’ve always been talkers, readers, movie lovers. What was true about us at 6 years old is true about us now. We gossip, laugh a lot, quibble. We looked so similar as small kids, with green eyes and white-blonde hair. We still do. We’re built about the same. I’m a bit taller and smaller-boned, but otherwise we could be sisters. And like sisters, we can annoy each other, and weaponize silence. Families, sigh.
I grew up at her house. Her mother was my other mother, who saw how amazing I was on the inside, not just how much better I could be doing. Shelley and I went through childhood and puberty together, played competitive tennis for years as partners and then didn’t see each other much for 40 years. We raised kids, buried parents; sad, scary things have happened to us both, as they have to everyone by a certain age. Now, we’re slower, less busy, a bit goofy.
For instance, this morning, while searching for the word “coaster,” the closest I could come up with was “coffee pad.” She laughs so hard when I say this, she has to cross her legs, and then almost loses her balance.
By the second lap, our bodies have loosened up, and we talk a bit less and look around a lot more, and listen. The creek is the place where the water and the land are in constant conversation. My vision is often blurred by dry eye, but there is a grace to myopia: I’m less fixated.
We walked this morning in raincoats because it was drizzling off and on, even as the sun shone through faintly. In my family, we always announced during a sun shower that it must be a monkey’s birthday somewhere. In Akira Kurosawa’s “Dreams,” a mother tells her child, “The sun is shining through the rain. This is the time when foxes have their weddings.”
Like most old friends, we can bobble along without talking for stretches. I listen for the soft orchestral music of the woods on either side of the path. After scanning the illuminated green scrim of trees ahead and far away, I pull closer in on individual trees, all arms and elbows and long legs. The trees just stand around, as is their wont. The drizzle plays them. What instruments are they? Mostly woodwinds, maybe oboes, some flutier, and then dark, dark trees, like kettle drums, like patches of life.
Because we go back so far, Shelley and I know each other’s souls and shadows, and each other’s major screw-ups, and there is comfort in this. Also, we have made mistakes with each other that have felt like betrayals. This happens in families. We have gotten so mad that we have ditched each other on the trail and shouted to each other’s back, “Don’t you dare walk away from me.” Actually, that was only me. We take breaks, make up.
By the third lap, my hip has begun coughing quietly to get my attention. It would like to go home now. My vision is even more blurry because of the drizzle and thin light, added to the dry eyes. This is part of what it means for me to be alive still, the blinky vision. Paradoxically, I see more. Now, instead of sharp focus, there’s an appreciation of shifts in light that reveal the mutability of the world. The light sometimes changes minute by minute, and with it we perceive changes in the energy around us, above us, inside us. It moves our attention outside our squinty, judgy little selves.
We point out dark-eyed Oregon juncos to each other and finches, the males with their glorious red headdresses and chests, the females in their faded brown bathrobes. We talk about spiritual things and people we hate — as she puts it, “people we’re allergic to, bless their hearts.’” We talk about our scattered minds: This morning, I was struggling to read some tiny print in a book, and, without thinking, I touched the printed page to pinch it out and make it bigger. Eeesh, I thought: Scary! But I was gentle with myself about it.
My hip has really begun to ache by the final lap. We talk and limp along. Easily half of the people in our conversations have passed on, all four parents, both of her younger siblings, dearest friends. We know that death won’t be so hard. We’ve seen many people through the end of life. It’s never dramatic, like Snagglepuss staggering around onstage clutching his throat. It can be rough, and then one slips over gently to whatever awaits. My old pastor told me it is like going to bed on the living room floor and waking up in your own bed.
Age is giving me the two best gifts: softness and illumination. It would have been nice if whoever is in charge of such things doled them out in our younger years, but that’s not how it works. Age ferries them across the water, and they will bring us through whatever comes.
Kevin Heyward poses next to his Austin car coffin that he made at the Coffin Club’s workshop
By Ryland JAMES
It’s a task of grave importance, but there’s nothing to stop New Zealanders having a laugh as they work on DIY caskets in the country’s “coffin clubs”.
Elderly club members meet for cups of tea, a bit of banter, and to literally put the final nail in one-of-a-kind coffins that will carry them to their eternal resting place.
Kevin Heyward plans to be sent off in a box resembling a vintage Austin Healey.
Registration plate: DEAD1A.
Kevin Heyward’s Austin car coffin is fully equipped with a mock steering wheel, windscreen, rubber wheels, wooden mudguards, painted-on side doors, and wing mirrors
“My daughter came up with the idea,” the 79-year-old car enthusiast said with a grin, brushing sawdust off his overalls.
It’s fully equipped with a mock steering wheel, windscreen, rubber wheels with metal hub caps, wooden mudguards, a bonnet, painted-on side doors, and wing mirrors.
“The trickiest part was getting the mudguards lined up because of their curve,” Heyward told AFP at the workshop of the Hawke’s Bay Coffin Club in Hastings.
The hefty casket, which can be carried with six wooden handles, even has working headlights. The batteries, naturally, are currently dead.
“It weighs quite a bit and I’m a big man,” he said.
“I have said to my six grandsons they had better start weight-training, because they will be carrying it one day,” Heyward chuckled.
“There is a bit of humour in this car.”
The club is one of four that have sprung up around New Zealand, with the first opening in 2010 in Rotorua on the country’s North Island.
Some clubs boast as many as 800 people on their books, though one admitted “not all of them are above ground”.
At the Hastings club, Jim Thorne, a spritely 75-year-old motorcycle fan, used his skills as a cabinet maker to build a casket painted with a motorbike track. It’s stored in his garage, alongside a collection of motorbikes.
Thorne said most friends “are a little aghast and say ‘why are you doing that?'” when they hear about his coffin-making hobby.
“Apart from the fact that I like the look of mine, it’s my input into my final days.”
– ‘Dying to get a coffin?’ –
“There is a certain mindset in some people that this is almost a taboo subject that they find very, very difficult to talk about,” Thorne said.
“They tend to overcome it. At the end of the day, it’s a reality of life, unfortunately.”
Elderly club members meet for cups of tea, a bit of banter, and to literally put the final nail in one-of-a-kind coffins
He breaks the ice with newcomers by asking: “Are you dying to get a coffin?”
But the club’s atmosphere is far from morbid.
Banter flows during the morning tea break as members chat over scones and hot drinks.
“We’re a bit unique, but we are happy. There are always lots of jokes,” said club secretary Helen Bromley.
Most members are seniors. The club provides a space to open up about death and dying during weekly meetups.
“I think everybody here has accepted that they are going to die, whether they’re decorating their coffin or helping others with theirs,” Bromley said.
“We’re a club that tries to empower people to plan their coffin, to plan what happens if they get sick.”
She said some members want to spare relatives the burden of meeting rising funeral costs. The club will also build and decorate coffins for grieving families.
Coffin Club organiser Helen Bromley works on the lining of a coffin
On average, a funeral in New Zealand costs around NZ$10,000 (US$6,200), according to the national funeral directors association.
Coffin prices range from NZ$1,200 to NZ$4,000.
– ‘Remember Me’ –
For a NZ$30 membership, the Hastings club gives each new member a pressed-wood coffin in one of three designs, ready to be decorated.
The coffins come in four sizes, each costing around NZ$700, extra for paint and a cloth lining.
During a tea break, Bromley announced that a member suffering from cancer was in intensive care after a fall. Her brother had asked the club to finish her coffin as a priority.
The club also builds ash boxes, which they sell to the local crematorium, and small coffins for infants, which they give away.
“The midwives and nurses at Hastings hospital have asked us to not ever, ever stop making the little coffins for them,” Bromley said.
“We donate to whoever. If there’s a miscarriage at home and they want a coffin, we donate.”
Members help knit blankets, teddy bears, pillows and hearts to go in the infants’ coffins.
Committee member Christina Ellison, 75, lost an infant daughter in 1968 and said she was comforted to know the club helps other families grieving the loss of a child.
“The little baby coffins are so beautiful and done with so much care. The knitting that the ladies do is incredible,” she said.
Ellison is moving away soon and plans to take her coffin, which has been painted a blue-grey colour called “Remember Me”.
