Ideal Practices For Providing End-Of-Life Care To A Loved One

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In a wheelchair in a nursing home, a woman in the last stages of a metastatic malignant breast tumor was asked what she needed for her 75th birthday. “Life” was her answer.

Aging and developing chronic medical health problems is a natural process. Unfortunately, some individuals have it harder than others and develop terminal illnesses that take a drastic toll on their health and those looking after them. In such situations, the best that close friends and family members can do is make the patient’s remaining time as pleasant and manageable as possible. The appropriate solution to turn to is good hospice or end-of-life care.

You may have heard the terms ‘palliative care.’ Suppose you have a friend or relative who has a terminal illness or is dying. In that case, palliative care aims to relieve suffering and handle problems while treating an actual illness such as cancer. The primary objective of end-of-life care is to ensure patients experience an acceptable level of comfort, personal satisfaction, and medical assistance.

Palliative care can help people who are no longer receiving treatment or whose illness is nearing death. It helps identify end-of-life care needs and facilitates trained caregivers and family members to meet all patients’ needs. It can take place at home, in nursing homes, and hospice care facilities. The palliative care team can help you set treatment goals and make crucial decisions.

Your loved one may lose the ability to speak, sit, walk, and eat. Daily tasks such as washing, grooming, dressing, and turning require full assistance from a caregiver. Your companion, the hospice team, or a caregiver with a terminal degree in nursing recommended by your doctor, can help you with these tasks. To ease the suffering, consider these ideal practices while providing end-of-life care to a loved one.

Talk to them and listen to what they have to say

Patients who know that their life is coming to an end may contemplate their beliefs, self-worth, or the purpose of their life. They may have questions about how they will be remembered or think of apologies or forgiveness from others. If the patient needs to talk about perplexing issues, you can speak and ask open or closed questions. If you’re not much of a talker, just lend an ear and listen as they unburden. Alternatively, you can also read books together, play music, or bring up very personal qualities of the patient.

Provide emotional support

Battling terminal illness and end-of-life situations can be emotionally exhausting for the experiencing them. If you are there, you can offer emotional support. Your presence nearby, sitting quietly, or holding hands can be comforting and reassuring. You can also make arrangements for other loved ones to visit and extend their support. However, to keep the patient’s comfort in consideration and ensure that you plan visits accordingly. That way, you’ll avoid too many people showing up at one time.

Creating a quiet environment with soft lighting and gentle music to remove distractions can improve the person’s mood, stimulate memories and help a person relax.

Provide comfort

Most terminal patients do not wish to make their caregivers uncomfortable. However, the truth is that there is only so much that you can do to provide comfort to someone in their final days. Given the situation, every bit counts. Consider the following tips:

  • While feeding, give a small spoonful of food. Cook meals enriched with essential oils and nutrients to ensure they’re eating healthy. It would be best to consult a doctor before meal prep to avoid giving them something that’s off the plate.
  • Dab the face with a slightly damp town to reduce dryness around the eyes. Apply medical-grade cosmetics to keep the appearance fresh and lively.
  • To facilitate breathing, gently turn the patient’s head, change the pillow or raise the head of the bed. Use a humidifier with a cool mist.
  • Apply ointments carefully on dry skin to reduce irritation.
  • Learn how to move and reposition people in bed to avoid injury.
  • Learn how to change sanitary pads, adult diapers, or insert a catheter to avoid discomfort while removing body waste.
  • Speak gently and reassuringly. Hold the patient’s hand or touch her/him gently and frequently ask if they need anything.
  • Use painkillers recommended by a doctor/professional caregiver only.
  • Observe whether the person is hot or cold. Change room temperature and bedding if necessary.

Consider respite care

It’s no easy feat to look after a patient in an end-of-life state; it takes a lot of patience, understanding, and nerve. The patient probably has many medical dispositions that require professional attention. You must be tolerant and composed enough to deal with that. However, there are alternatives to conventional caregiving options that can prove to be quite beneficial.

 Respite care aspires to provide relief for you and your family from the difficulties associated with end-of-life care. Respite care offers a unique opportunity for a mental break and recreation for everyone involved in the process. Not only is this method effective in providing comfort, but it serves as an excellent break from the otherwise gloomy atmosphere in traditional caregiving facilities. A hospice volunteer may spend a few hours meeting the patient to check on their health, or the patient may visit the hospice office close-by to the retreat.

Conclusion

Providing terminal care to a loved one can be emotionally and physically exhausting. The ideal way to go about it is by providing emotional support and comfort to your loved one. Support them, talk to them, and help them out with routine tasks such as eating and cleaning. Consider on-boarding a trained professional to ensure that you do not falter along the way.

Additionally, it would be wise to keep a watch on your own physical and mental health. You will be unable to look after your loved one if you cannot cope with the fatigue and stress that accompanies taking care of someone in their final moments. Don’t forget to love yourself in the process.

Complete Article HERE!

Behind Closed Doors

— ‘the Difficulty and the Beauty’ of Pandemic Hospice Work

Javier Urrutia, a home hospice music therapist, celebrating Josniel Castillo’s 11th birthday in Queens.

“I did not really understand when people would ask, ‘Why me and why my family?’” a hospice chaplain said. “Now I was asking the same questions.”

By James Estrin

This year was different.

The coronavirus pandemic dramatically changed Ms. Saoui’s work as a home hospice nurse in New York. Safety precautions created a physical distance between her and her patients and even cut some of her hospice colleagues off from their clients’ homes altogether last year. It deprived families and caretakers of ways to grieve together, and confronted hospice workers, however familiar with death, with a staggering scale of loss.

Through all the pressures, Ms. Saoui and other workers continued to provide solace and even moments of happiness to dying patients and their families.

“You sit down and you listen,” she said. “They express their fear, they express their emotions, and you guide them and tell them what to expect.” After a patient dies, she added, “I often want to hug the family members, but I cannot do that now.”

Instead, Ms. Saoui said, “I pray and do the best I can.”

More than half a million Americans have died from the coronavirus, and many have died in pain, isolated from their families. Ms. Saoui contrasted those conditions with what she called a good death: “peaceful, pain-free, at home and surrounded by their loved ones.”

While nurses have continued in-person home visits, some chaplain, social work and therapy sessions moved online because families preferred it. By August, most of that care switched back to in-person visits but with strict precautions, including wearing full P.P.E. at times and keeping six feet apart whenever possible.

Ms. Saoui examining Pedro Torres, while his wife, Gloria, and his son, Darron, look on.
Ms. Saoui examining Pedro Torres, while his wife, Gloria, and his son, Darron, look on.

Though a vast majority of Ms. Saoui’s patients in the last year did not have the coronavirus when they entered hospice, challenging restrictions have been placed on all patients and caregivers. Home hospice care can last for many months, and workers often develop close relationships with patients and their families.

But the pandemic has meant fewer occasions for families — and hospice workers — to mourn together in person at funerals or memorial services. For over a year, the size of those gatherings has been strictly limited by many states to try to stem the spread of the virus.

Nurse Hanane Saoui visits Diane Wilcox at her home in Queens.
Nurse Hanane Saoui visits Diane Wilcox at her home in Queens.Credit…

When hospice patients die, their caretakers often work through their own grief and loss in weekly staff meetings and gatherings with colleagues who shared the same client. These staff meetings are now online, but the loss of being able to hold each other and shed tears together has deeply affected hospice workers, said Melissa Baguzis, a social worker who specializes in pediatric cases. She has developed her own ways to handle the loss of her young patients.

“I take a moment, light a candle and read their favorite book or listen to their favorite song,” she said. “I have my own time for them. We do become connected with their families, but when I’m in their houses, that is their grief and I’m going to support them. I need to process my own loss outside of that.”

A nurse, Ozail Bennett, dressing in protective equipment before going to see a home hospice patient that has the coronavirus. Mr. Bennett also contracted the virus last April.
A nurse, Ozail Bennett, dressing in protective equipment before going to see a home hospice patient that has the coronavirus. Mr. Bennett also contracted the virus last April.

The hospice workers in the MJHS Health System, a nonprofit that covers New York and Nassau County, are comfortable around death in a way that many Americans are not. But the pandemic has put an extra weight on them and their patients, Ms. Baguzis said. “We all share in each other’s grief now more than ever,” she said.

The Rev. Christopher Sigamoney, an Episcopal priest who is a hospice chaplain, said he has tried to be there for his patients “even with their frustration, anger, hopelessness, depression and anxiety.”

Father Christopher Sigamoney talks with Joseph Lai.
Father Christopher Sigamoney talks with Joseph Lai.

He often told patients’ family members that it was “OK to be angry at God” over the loss of their loved one. But he said that the death of a beloved cousin from the coronavirus had changed his understanding of his work.

Father Sigamoney and his family were unable to be with his cousin, a retired doctor visiting from India, during the three days while she was on a ventilator in the hospital at the end of her life. He and a handful of relatives said “a few prayers” in the funeral home, he said, but they were unable to have a “proper burial” or ship the body home to India because of virus restrictions.

Father Christopher Sigamoney prays with patient Diane Wilcox at her home in Queens.
Father Christopher Sigamoney prays with patient Diane Wilcox at her home in Queens.

“I did not really understand when people would ask, ‘Why me and why my family?’” he said of the time before his cousin’s death. “Now I was asking the same questions. I said to God, ‘Now I’m angry at you, and I hope you can forgive me.’” Father Sigamoney said he was slowly recovering through prayer and helping his patients.

Last month, Josniel Castillo was hooked up to a battery of medical machines and monitors, surrounded by his parents and a multitude of stuffed animals, as Javier Urrutia, a music therapist, and Ms. Baguzis entered his cramped bedroom. Despite his declining medical condition because of a rare genetic disease, this was a happy day. It was Josniel’s 11th birthday.

Mr. Urrutia launched into “Las Mañanitas,” a traditional Mexican birthday song. Josniel’s mother and father, Yasiri Caraballo and Portirio Castillo, joined in. Ms. Caraballo wiped away tears. They were, she said, “tears of joy” because she had not expected her son would live to be 11.

She requested another tune, and played tambourine as Mr. Urrutia launched into “Que Bonita Es Esta Vida.” They sang the final chorus together, part of which can translate to:

Oh, this life is so beautiful

Though it hurts so much sometimes

And in spite of its sorrows

There’s always someone who loves us, someone who takes care of us.

Afterward, Mr. Urrutia said most people are “unaware of what’s happening behind closed doors, both the difficulty and the beauty.”

Melissa Baguzis, a MJHS hospice social worker, visiting Josniel Castillo on his 11th birthday.
Melissa Baguzis, a MJHS hospice social worker, visiting Josniel Castillo on his 11th birthday.

This year in countless homes, there has been “a lot of pain and suffering, it cannot be denied,” he said. But in hospice work, he said, “you also see all of the heroes out there doing the simple things of life, caring for each other. The husband taking care of his wife or the mother taking care of her son.”

“Dying is a part of life,” he added. “Only living things die.”

Complete Article HERE!

Every time one of my patients dies I buy a plant in their memory

Every time a patient passed away, I’d go to the garden centre and search either for a plant with their name or for a plant I thought represented them

By Katie Hodgkinson

When I started work as a doctor two years ago, I was living alone with one sad succulent and a pot of thorn-filled roses my boyfriend had given me.

I’d always liked plants, but I’d never been able to keep anything alive longer than a few weeks – in fact, my dad had been watering our fake one for years!

On my first rotation, I started on a combined cardiology and stroke ward, which, as you can imagine, sees quite a few patients with life-changing conditions. I’d made friends with one of the hospital palliative care sisters and she often came to help us with patients who were experiencing breathlessness, pain and agitation.

The first woman I met in a hospice, when told she’d have weeks to live, was insistent that the only thing she wanted to achieve in her remaining time was to ‘see the flowers bloom in spring’.

The staff bought her bulbs, and I’m told she lived long enough to see the first ones flower. It really struck me that after a lifetime in this world, the thing that mattered most to her was seeing the colours and life that comes with a new season – I’d never really thought of plants in that way before.

In my first few weeks, I started to develop relationships with some of our longer-term patients. There was one woman who I took blood from every morning and for whom I requested countless tests, scans and meetings.

Her family weren’t local, and we’d often share a giggle over the comings and goings of other women in her bay; I ended up being her most regular visitor.

One weekend I checked her blood results to see what we’d really been hoping not to see – she’d grown a nasty bacteria in her blood, and would need at least a further five weeks of antibiotics.

Sadly, we never managed to get on top of the infection. We gave her stronger drugs, blood transfusions and called her family in to be with her. She passed away peacefully, and that evening I went with the palliative care sister to a garden centre.

It was meant to just be an escape from long days on the ward and my first close patient death, but the centre had named all their plants – and when I saw one with her name on, it felt like some sort of sign. It was a bright and bold Calathea, with vibrant pink stripes that cheered me up instantly. I took it home with me.

Naturally in a busy city hospital, more of my patients died despite our best efforts. We brought in families, arranged a wedding for a terminally ill patient, and I even smuggled in someone’s new puppy inside my jacket (infection control approved, of course.)

I was 24 and seeing more death than most people see in a lifetime – but although it was horrible, it was also an honour to be a part of a team that could help these people have a good death.

No one wants to think of their life coming to an end, everyone wants to be comfortable and surrounded by the people they love, and it was so rewarding to be able to offer that.

Every time a patient passed away, I’d go to the garden centre and search either for a plant with their name or for a plant I thought represented them. I wanted to remember them.

I became better at looking after the plants in my flat. I developed a watering schedule, bought plant food, repotted them into pretty jars I’d found in shops, took them for showers if I thought they were dry – anything I could do to emulate the kind of care I was trying to give to my patients.

Most doctors have something they do to remember the people they’ve cared for – whether it’s lighting a candle, a quiet moment at the end of the day or debriefing with friends. I’ve heard of people planting trees – but I think individual plants might be one of the more unusual coping mechanisms!

When the pandemic hit, I was working in elective orthopaedics and my ward was the first to start accepting Covid-19 patients. Despite all the research, the treatment plans were often simple – oxygen, more oxygen, steroids and if needed, machines to take over breathing when patients became too tired.

We sent patients to ITU, and those who deteriorated we made comfortable. We took over the role of the families who weren’t allowed in, lest they put people in danger.

We held hands with patients while they passed away and we held up screens so their families could be there until the end. It was devastating knowing that pre-pandemic, we’d have had crowded side rooms filled with loved ones, and yet because of the risks they had me in full PPE, unable to even hold a hand without horrible sweaty gloves.

When I started my Covid-19 work I had about 15 plants and a watering can made out of an old sauce jar. Then garden centres closed in the first wave, but I ordered more plants online.

After eight months, I started to run out of room in my flat, and my friends suggested buying one plant per week rather than per patient. It didn’t feel right – not the level of acknowledgement I wanted for these people who had lived such full lives.

I started planting seeds, lighting, candles – anything I could to still feel like I was acknowledging the loss of so many people. I asked for help on Twitter, and people suggested planting trees, donating plants, getting an allotment – but none have felt quite right just yet. 

Thankfully I live alone, so the ever-expanding wave of greenery wasn’t too annoying – but I have started letting my fiance choose where we put some of them! It’s lovely to be surrounded by so much new life and I get so excited whenever I see a leaf start to unfurl – I am reminded every time to appreciate it by the woman who wanted to see the flowers bloom in spring. I like to think she’d be just as thrilled.

Now I work in a different hospital, and thankfully fewer people are dying. I’ve been able to propagate my existing plants to grow smaller baby plants for my friends.

I still have a plant for every patient who passed away while I was their doctor; it looks like I live in a jungle, with more than 60 plants, but I’m starting to prune and take cuttings so that other people can share the joy.

For some of my paediatric patients, I’ve decorated pots with stickers of their favourite things – Peppa Pig, octopi, even one covered in fingerpaint.

The time I spend looking after my plants has become the time when I can reflect on everything that’s happened and all the people I’ve cared for.

Sometimes it’s a sad experience, and sometimes it’s a more joyful process where I can think of those that got to go home.

I think of all the things I have yet to learn, how far I’ve come, and how many more patients I will get to meet. I think I’ll always dedicate a plant to a lost patient; I just might need to move to somewhere with a garden.

Complete Article HERE!

The Costly, Painful, Lonely Burden of Care

Health care in the U.S. relies on an “invisible army” of caregivers — mostly women. For many, stunted careers, lost earnings and exhaustion are part of the fallout.

By Mara Altman

— Kate Washington, the author of “Already Toast: Caregiving and Burnout in America”


In 2015, Kate Washington’s world changed. Her husband, Brad Buchanan, was late for family dinner. She found him in the bathroom, coughing up blood — a lot of it. She handed him a bucket and asked the neighbor to watch their two young daughters while she drove him to the emergency room.

Doctors found that a tumor had ruptured in one of his lungs and he urgently needed chemo. As her husband became critically ill, Ms. Washington, a freelance writer, was thrust into the role of nurse.

After Mr. Buchanan’s first round of chemo, the tumor shrank too quickly, causing his lung to collapse and then fill with thick, toxic fluid that put him at high risk for infection. Before he could continue treatment for cancer, he was sent home to recuperate.

Ms. Washington found herself performing high-level nursing tasks, like administering antibiotics three times a day through a PICC line — a thin tube that leads from veins in the arm to the veins near the heart. “My hands were shaking,” she said as she remembered apprehensively pushing in the drugs for the first time and feeling the weight of keeping her husband alive.

But that weight would only become heavier when Mr. Buchanan had a stem cell transplant that left him with graft-versus-host disease, a condition that occurs when donated cells attack the body.

After spending four months in the hospital, becoming temporarily blind and unable to walk, eat, dress or use the toilet on his own, he was given his discharge papers. A doctor told Ms. Washington that her husband would need 24-hour care and “could not be left alone for even a moment.” When she explained that she had two children who also had needs, he said, “Well, usually family steps in, and it works out fine.”

Ms. Washington felt the burden of responsibility, but also the sting: The U.S. health care system relies on and takes for granted the “invisible army” of people — mostly women — who keep the system functioning by performing home care for the many people who are “too well for the hospital” but “too sick for home,” as well as for those on end-of-life care.

In 2017, AARP found that about 41 million family caregivers in America perform roughly $470 billion worth of unpaid labor a year. Since then, the number of caregivers has increased to 53 million, meaning that more than one out of five Americans are caregivers, according to AARP’s latest report.

Depending on the analysis, between 61 and 75 percent of caregivers are women, and they tend to do more personal care tasks like helping patients bathe and use the toilet than their male counterparts, who are more likely to oversee finances and arrangement of care.

Female caregivers put in more hours — 22 to men’s 17 — and they are also more likely to stand by their partner through a serious illness. According to a study in the journal Cancer, women living with brain tumors or multiple sclerosis were seven times as likely to be abandoned by their spouses as men with similar diseases.

Many people who take on caregiving roles experience negative health impacts, but women are especially at risk of the fallout from caregiver stress. Female caregivers are also 2.5 times more likely to live in poverty as non-caregivers, with many leaving the work force to do care work. A 2011 study found that women who left their jobs to care for a parent lost an average of $324,000 in wages and benefits over their lifetimes.

Ms. Washington was able to dip into savings and a recent inheritance to help pay for supplemental in-home care, but it was still a struggle, causing stress, resentment and lost income.

Her book, “Already Toast: Caregiving and Burnout in America,” published by Beacon Press and on shelves this week, details the day-to-day challenges of caring for a partner with severe illness, but it also examines how the health care system must change to better support caregivers. “If society wants us to keep caring for others,” she writes, “it’s going to have to show a little more care for us.”

In Her Words spoke with Ms. Washington over phone and email. The conversation has been edited for length and clarity.

If we go with the metaphor that cancer is a battle, then you call yourself “collateral damage.” Explain.

I was compelled to enter this new life where the center of it was caring for someone else, and even though I love that person very much, it was a hard loss. It was hard to have my life put on hold. Everything kind of slipped away.

As you became “collateral damage,” what was lost?

I lost a sense of who I was. I was going to pick up a prescription for myself, the only prescription I had when my husband was sick, and the pharmacist asked for my date of birth, and I gave his date of birth. I was so used to picking up things for him, I spaced on the fact that I also had needs. For a few years, I essentially stopped having a professional life. There was this feeling of erasure — that my needs and desires were no longer important.

What was the fallout of not feeling seen for so long?

I got angry. That sense of being unseen became literal because Brad had lost his vision, which is not to blame him for that at all, but it made a metaphor an actual, concrete thing. The things I was doing for him were being taken for granted or were invisible to him. That started to create resentment. I wanted to be acknowledged for how much I was giving up of the life I normally would have been leading.

What could have helped you feel acknowledged?

A culture shift to valuing care isn’t really a quick fix exactly, but that would be nice. From the medical establishment? Not taking at-home care for granted.

There is also a longstanding gender stereotype that women are the caring sex. There’s a lot of pressure on women to conform to and stick with these roles and to not raise their voices about all the difficulties they face. Just because women are expected to do the caring, doesn’t mean it comes easier to them.

You express in your book that a disservice to caregivers is equally a disservice to those receiving the care. Can you explain this idea?

If there is too much responsibility on caregivers, the patient can suffer. Burnout can undermine the sense of empathy, the sense of love and the sense of providing good care.

This can impact practical outcomes, like how quickly the person can recover, but it can also be damaging for the relationship between caregiver and the recipient of care, which is less quantifiable, but also hard to contend with.

There was a powerful quote in your book from Evelyn Nakano Glenn’s “Forced to Care.” She wrote that our society views family caregiving as both “priceless and worthless.”

There is a narrative that the caregiving work we do is invaluable and the gift of caring is its own reward, but the flip side of something being priceless is that you paradoxically strip it of all its value. It’s so valuable that we can’t put a monetary price on it, which then takes away the economic worth.

People talk about how it’s the most important job in the world, taking care of our children or taking care of our vulnerable elders, and yet those are some of the worst paid jobs. How much is a quarterback paid versus someone who is doing care for a vulnerable elderly person?

How did care work become so undervalued?

The historical roots are complex, but as Evelyn Glenn puts it in “Forced to Care,” Western culture has long framed care work done by women as a moral duty or obligation, rather than an economic activity.

Whereas in preindustrial times, women’s domestic work was understood to contribute to a household financially, the Victorian era saw a gendered split between the domestic sphere and the economically productive public sphere. Family caregiving fell into the realm of women’s work and — like child care and other domestic labor — became economically invisible and not counted in GDP. In turn, the association between care and women’s free or compelled labor has produced stigma and low wages for professional care work — a vicious circle of devaluing.

You write that taking on the role of unpaid caregiver, a role that often isn’t a choice, can have generational impacts. Explain.

If your earnings are lower than they would normally be because you’re busy caring for a family member, and you can’t save and pay into social security, it can lock whole families into a cycle of lower wealth and economic instability.

How can people best help their caregiver friends and neighbors?

There is a reason that taking people a meal is a classic, because it is super helpful. If you do that, always bring disposable containers so that the person does not have to return them. Offering to help with errands or with child care is great, and if the situation permits, offer to sit with and stay connected to the person who is ill. When Brad could be more in touch with his community, it eased some of the pressure on me.

And what should someone not do?

Don’t tell someone to stay positive. For me, there was no staying about it, because I didn’t feel positive to start with. It brought up this feeling: My time isn’t my own, but surely my emotions can be.

Complete Article HERE!

I want my dying patients to have good deaths. I grieve for all those who died alone this year.

By Roshni Kakaiya

February marked one year since I last saw somebody die in our hospital surrounded by their loved ones. To give you some context, I am a physician in training in the South Bay — a community that was hit particularly hard by the novel coronavirus that can lead to COVID-19. As a family medicine resident, I take care of patients in our clinic, admit them to the hospital, care for them in the ICU, and even deliver their babies. As such, I am no stranger to the never-ending cycle of birth, illness and death, especially during the pandemic.

Yet I can tell you that a few moments of clarity shine bright against the haze of this past year. This memory of my patient’s death stands out so strikingly to me because of the comparison with what came down just a few days later, when our lockdown began and our hospital policies changed.

One year later, I can close my eyes and still picture this patient and her family. The patient was in her 80s and the matriarch of her family. The day before she died, she had woken up with some energy and was able to speak with her daughters who were at bedside most of the day. We see this sometimes in the days before people pass — they get a burst of vivaciousness that sometimes fools us into thinking they are doing better.

The day my patient died, her daughters were holding hands and all touching some part of their mother, grieving together and comforting each other. Their husbands and children were somberly in attendance, intermittently wiping away tears. There must have been at least nine people in that room, something I can barely imagine now with our limited visitor policy. The daughters sang the patient’s favorite hymn, and they were even able to play part of a sermon their mother loved. Every time I walked into the room to check on this patient, I immediately felt the warmth, the love and the comfort the family was bringing to each other. This was a good death. This was a death filled with love, and touch, and warmth, and solidarity, and connection, and presentness. This was a death the family could remember and discuss as needed as its members mourned, which, as we have come to know, is crucial to processing such a significant event. This was a natural death of a woman in her 80s who had lived a long and wonderful life.

As a physician in training, it initially felt counterintuitive how much time we spend thinking and talking about death with our patients in both the hospital and clinic setting. However, I’ve come to realize that some of my most important work comes in the form of advocating for my patients to have a good death. A death they would have wanted, maybe even that they could have chosen for themselves — a peaceful death or a death with a fighting spirit up until the very end.

As I see our patients dying mostly alone in our hospital, with only family being able to visit, one or two at a time in the hours before a person is about to die, or looking at their loved ones through the window as they are intubated and sedated, I grieve for our community. I grieve for those who have had so many good deaths taken away from them — and had them instead replaced with a screen from which to watch their loved ones slowly dwindle away. I grieve the good death, the death that comes with a natural closure. Yet I am hopeful that one day we will return to this good death — the death that is filled with touching, hugging, crying, laughing, and snot flying everywhere. One day, togetherness will not be the vector for more deaths and more grieving. It will be the balm that heals us from the most difficult year of our lives. This is the death I wish unto you and your families in the future: the good death, a death worth dying for.

Complete Article HERE!

On life, death and dying

Theresa Hamilton plays tic tac toe on a window with a senior in Mt. Cartier Court as the pandemic limited in-person visitors into senior care homes.

By

Theresa Hamilton wants to help people die better.

“I find that I am a magnet to it and I really care and I want to talk to people about sad, happy, absolutely everything,” she said. “When you keep death natural you get to see the beauty in it.”

Hamilton works as the executive director for the Revelstoke Hospice Society and as a death care practitioner, also known as a death doula. She hosts monthly death cafes where people can ask questions and talk freely about dying.

“I want to teach as many people as I possibly can what they have within themselves, and I have seen how, when you do a lot of the work around creating quality of life for people before the end of life, or creating rituals or ceremonies or being able to create a legacy project with somebody before they have died, that always ends up helping the grieving process,” she said.

Hamilton and her partner bought a home in Revelstoke in 2016, but had spent the previous five winters in the city, going back and fourth between here and Grand Bend, Ont.

For five years she worked at the La Baguette at RMR.

“I was immersed in everyone riding and loving the ski hill. I think just being a happy face in people’s daily lives just really kind of launched me (in the community),” she said.

But eventually she felt she had to put her education to use.

Hamilton originally went to university intending to be a social worker. There she discovered thanatology, the scientific study of death and losses.

She also completed Indigenous Studies, which changed her views on dying and made her realize how much she had to unlearn.

“It is a more holistic method than we are used to,” she said.

Hamilton has been volunteering for hospice societies in every town she’s lived in.

“I really admired how small and mighty they were,” she said.

Revelstoke was no different, and with the previous director stepping out, Hamilton was tapped to take over. Though she is now paid by the society, she said she probably volunteers more now than she did before.

Hamilton also helps with Community Connection’s Food Recovery program, the Revelstoke Snowboard club and the Revelstoke Performing Arts Centre, when they are operating in-person.

“I just think that volunteering is your daily vote for democracy,” she said. “I am creating the world that I want to live in.”

Hamilton is also an activist and she supports everyone’s projects.

“Social justice anything is always on my radar because I think we have safety in numbers,” she said.

With all these causes under her belt, she often gets labelled a “Mother Theresa” type, which is something she brushes off.

“I don’t see it as being amazing the way my friends tell me it is amazing, it’s just like, ‘Yeah, but, that’s life,’” she said.

However, the namesake she is happy to claim is her grandmother Theresa, who she never met, but who also did death care work through the Catholic church.

“It’s really nice to know that I am fulfilling my ancestors roll,” Hamilton said.

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Facing Terminal Cancer

Support helps families come to terms with looming loss

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Last April, Rogers Park resident Aisha Luster got the biggest shock of her life when she learned that her father was diagnosed with stage 4 esophageal cancer. “He didn’t tell me or my older sister,” says Luster, 37. “We were crushed. We felt left in the dark. It was devastating.”

Within two months of sharing the gut-wrenching news, Luster’s father died. “He spent the last week of his life in a hospital alone due to Covid,” Luster recalls. “That was one of the worst days of my life. I never knew I would lose him. I have definitely been affected mentally, physically, and emotionally. It still feels like a bad dream I can’t get out of.”

Luster’s father was one of an estimated 606,520 Americans who died of cancer in 2020. Grief, depression, panic, and anxiety — for both the individual and their family — are common when dealing with terminal cancer.

Facing imminent loss is not easy. Yet, end-of-life support from palliative care services, such as hospice care, can help patients and their loved ones cope with these emotions and prepare them for what to expect.

End-of-life discussions

Talking to family members about their wishes can help make choices easier for caregivers.

“Families are under an enormous amount of stress, especially if the medical problem came suddenly and they didn’t have any opportunity to talk to the patient or to anticipate the problems,” says sociologist Susan P. Shapiro, a research professor at the American Bar Foundation in Chicago and author of Speaking for the Dying: Life-and-Death Decisions in Intensive Care.

To watch their body breaking down before your very eyes definitely had a huge impact on me.”

End-of-life discussions establish transparency and prevent misinterpretations of the individual’s final wishes, she says. “When patients never spoke to family members in advance about what they wanted, family members were very, very torn about what they should do.”

For those living with terminal cancer, coming face-to-face with their looming mortality can be painful.

Between 15% and 50% of cancer patients experience depressive symptoms, according to a review article in the journal Dialogues in Clinical Neuroscience. Depression in cancer patients contributes to physical and psychological problems, it says. And depression may be associated with higher death rates.

Christine Schwartz-Peterson, MD, is a hospice medical director at JourneyCare, a hospice and palliative care agency that’s headquartered in Glenview and serves 13 counties in Illinois. Part of her role involves caring for terminally ill patients who experience depression or anxiety.

“Our patients and their loved ones are going through tremendous loss while on service with us,” Schwartz-Peterson says. “Our skilled hospice teams, which include social workers and chaplains, are trained to recognize this pain and help support them throughout this difficult time.”

Social workers provide resources such as emotional support, counseling for patients and caregivers, and funeral planning that reflects the patient’s final wishes. Chaplains, tasked with easing spiritual healing through physical and emotional pain, aid patients and families with some comfort in spite of illness.

Relying on such services helped Lombard resident Melissa Schmitz.

In 2016, when she was 44, her father was diagnosed with stage 4 pancreatic cancer.

“There’s really no way to prepare for that. To watch the person you love, who has always taken care of you your whole life, to watch their body breaking down before your very eyes definitely had a huge impact on me,” Schmitz says. “But there was nothing I could do to actually fix it or help it, and that was devastating for me.”

Ultimately, palliative care, which supports patients and their families, enabled her to reach peace with the end-of-life process. As her father’s cancer progressed in the last weeks of his life, the Schmitz family decided to move him to hospice care. 

With the help of hospice physicians and social workers, Schmitz was able to provide her father with individualized end-of-life care. “I was pleasantly surprised. I didn’t want him to be in a hospital room, and he didn’t want to be in a hospital room,” she says. They all achieved a measure of peace. “JourneyCare allowed me to basically move in for the last couple of weeks. I never had to miss a minute with him. And that was wonderful.”

Supporting the overlooked

It’s important to support the mental health of family caregivers as well as patients, says Dana Delach, MD, a JourneyCare physician specializing in hospice and palliative medicine. Caregivers, who are often physically and mentally exhausted, can be overlooked when someone is dying.

Friends and family can step in to listen, care, and offer support. “If you know someone who is a caregiver, it is important to ask how you can help,” Delach says. “Sometimes the best gift you can give a caregiver is the gift of being present. Truly present. Sit with them while they provide care. Be a person to listen as they express their myriad emotions.”

Like Luster and Schmitz, Lincoln Park resident Simone Malcolm understands the signifi-cance of addressing family mental health during this difficult time.

In 2010, Malcolm’s mother revealed to her that she had breast cancer. At the time Malcolm was 20 years old. “When my mother first told me of her diagnosis, I was devastated because I thought I was going to lose my mom. I was scared, and because of that, I wasn’t there for her as I should have been,” Malcolm says. “I put a lot of my focus on school, my friendships, and hanging out. I acted as if everything was normal and I didn’t have a sick parent.”

Complicating matters for Malcolm’s mother was that she was initially misdiagnosed. By the time she was properly diagnosed, the cancer had reached stage 3. “My mother was hopeful that she would beat the disease,” Malcolm recalls. “Because of this, we did not speak about what would happen if she was to become incapacitated.” Her mother passed away later that year.

Drawing from her experience, Malcolm offers recommendations for those facing the same situation she did a decade ago. It’s important to be present for loved ones and involved in their care, she says.

“The advice I would give is to make sure the family stays on top of doctor’s visits and make sure they ask a bunch of questions so they are informed,” she says. “Also, be there for your loved one. They need all the support and love.”

Complete Article HERE!