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.

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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.

Complete Article HERE!

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!

Embracing the Role of the Death Doula for Your Hospice Patients

Meeting people at the end

by Daniel Morris

Many people know about the role midwives and doulas play in managing pregnancy and childbirth, but few are familiar with the concept of the death midwife, also known as a death doula. This person helps patients and their loved ones cope during the end-of-life phase. Life and death are both natural processes, but many people struggle to come to terms with the emotional difficulties of dying. Your homecare agency can enhance emotional support during this time by hiring a death doula to accompany your services.

Let’s go over the role of death doulas and answer some questions about how they operate and how they can deepen your homecare agency’s services during the end-of-life process.

What is a death doula?

A death doula helps manage the transition between life and death. During this time, a doula may act as a companion to the dying patient or as an advocate for the family’s needs. By nature, this role is holistic and highly personal. It depends a great deal
on what extra support the patient and family may require.

Death doulas are becoming more popular because they are filling a need created by the way families and communities are currently structured. In the past, communities were closer-knit and family members were nearby; today, that may not be the case. Death doulas can play a key role in bridging the gaps that can arise in companionship and end-of-life care, especially when a patient chooses to die at home.

What services does a death doula provide the dying patient?

A death doula will work to comfort the dying patient and coordinate legacy activities. Some common activities may include:

  • Listening actively, leading light conversation, answering a patient’s questions, helping them find peace
  • Providing comfort through reading and companionship
  • Using anxiety-reducing techniques such as guided visualization, meditation and massage
  • Refreshing their room with pillows, candles or beloved objects
  • Suggesting and supporting legacy projects, gifts and/or letters
  • Discussing end-of-life wishes

What services does a death doula provide the family?

A death doula works closely with family members to meet their needs during this difficult time. Many family members describe a death doula as a calming, supportive presence in the process. A death doula can provide a variety of support options, including:

  • Identifying the needs/preferences of the family
  • Providing respite care
  • Discussing end-of-life planning, such as advanced care directives, vigils, after-death body care, funeral planning and memorial services
  • Planning last hours of life, including goodbyes and favorite activities
  • Suggesting and supporting legacy projects, gifts and/or letters
  • Facilitating difficult conversations and advocating for the family’s rights
  • Coordinating domestic care, such as housekeeping, lawn care or pet care
  • “Just being there” to provide companionship and support

In addition to the acts of care listed above, a death doula can be beneficial to the patient and family in other ways. Often a professional caregiver isn’t there 24/7, so there are long breaks when a patient may be alone. Death doulas can cover some of these hours, providing comfort in those final weeks of life.

Death doulas may also provide emotional and spiritual support that is missing from the traditional hospice care experience. With their mere presence, a death doula can provide a shoulder for a family to lean on.

Why should home hospice providers partner with a death doula?

Your home health and hospice agency may need extra support during the end-of-life phase, as the act of dying can be a time for all hands on deck to ensure patient and family comfort. In this case, you should reach out to a death doula. They will listen to both your agency’s needs and the patient’s needs to create an end-of-life care plan that works for you and the patient. It’s important to find a doula that you and the family feel a certain chemistry with, as this person will be involved while care services are performed.

Home hospice providers who have experience working with death doulas find that it’s great for enhancing the end-of-life experience. A death doula will coordinate with your agency’s hospice nurses and workers to fill care gaps and provide more emotionally oriented activities for the family and patient. They should work closely with family and professional caregivers, taking the time to understand the caregivers involved and coordinate with them to provide end-of-life care. It’s also common for doulas to get a clear sense of caregiver gaps, such as respite care. You should work together in order to make sure that their services complement those your agency already provides. The overarching goal is for each patient to receive an enriching end-of-life experience.

Are death doulas certified?

It’s important to note that a death doula is not a medical professional and doesn’t have a medical role in a patient’s care. For example, they can’t prescribe pain medication or take vitals. Instead, a death doula provides emotional and spiritual support.

There’s currently no credentialing body for death doulas. However, all death doulas should have appropriate training. Training courses are offered by accredited organizations such as the International End of Life Doula Association (INELDA), the Lifespan Doula Association and the University of Vermont. When you search for a doula, make sure they have the required training.

Also note that death doulas aren’t typically affiliated with any particular religion. In fact, doula services are often designed to be universal. Whether your patient adheres to a specific religious tradition or not, a death doula can still be appropriate.

How do you find a death doula?

You can start your search for a death doula on the INELDA website, which lists trained death doulas by locale. I also recommend talking to friends and family about their experiences with death doulas. Ask your patients and their families if this is a service they would benefit from.

While being a death doula is a service to the dying patient, it is not typically a volunteer position; however, you may also be able to work with an organization that provides volunteer death doulas to work at some care facilities. Some death doulas will charge rates by the day or by the hour, or they may charge an overall fixed price. If you are bringing a death doula onto your staff, you should discuss pricing to understand how the service will affect the patient’s final bill.

Death doulas play a comforting role during the dying process. Consider hiring a death doula for your homecare agency to get the emotional support your patients need during their transition from life to death.

Complete Article HERE!

‘I will hold their hands’

— Chaplains give terminal COVID patients a chance to say goodbye

By Will Peebles

Two days after a parade-less St. Patrick’s Day in Savannah last year, Mayor Van Johnson declared a local state of emergency because of COVID-19. The next day, March 20, the Georgia Department of Public Health reported the first two cases of COVID-19 in Chatham County. In the year since, Chatham County has lost more than 350 people to the virus. This article is one in a series that examines how individuals have dealt with a year-long crisis and have helped pull the community through the pandemic.

Rachel Greiner remembers when the reality of COVID-19 truly hit home for her.

In June, Greiner, the director of Memorial Health University Medical Center’s Pastoral Care team, found herself making arrangements for a mother and daughter, both sick in the hospital with COVID.

The daughter, the more serious case, was on the hospital’s COVID intensive care unitfloor.

She was dying.

Her mother was on the floor above her, reserved for patients sick enough to be in the hospital, but not yet sick enough to require ICU care.

Greiner and her staff of chaplains worked to get the mother into her daughter’s room. They were together until her final breath, a powerful, truly human moment — a final goodbye.

“And it was, of course, a sacred time, very beautiful that the hospital worked in order to get this woman down to be with her daughter,” Greiner said. “And while that was happening, my phone was ringing, and it must have rang six times.”

While Greiner was making sure a mother could be there with her dying daughter, her own children’s daycare was calling. She stepped out, in full personal protective equipment, to return the missed calls.

The daycare told her one of the teachers contracted COVID, and was calling to tell Greiner her children had been exposed.

“Now, that’s so commonplace I would roll my eyes if they called me and told me that today, but at that juncture, literally standing at the deathbed of someone with COVID-19, hearing that my children had been exposed to it — that was probably the moment that I was like okay, this is really real now,” Greiner said.

As a chaplain, Greiner deals with heart-wrenching situations on a daily basis. And for the last year, there has been no shortage of difficult work.

It’s a misunderstood profession, Greiner said. She and her team provide spiritual care to patients in the hospital, but it isn’t a single religion — in fact, it’s not inherently religious at all.

“We call it a ministry of presence. Sure, a lot of the things that we do are religious in nature. People want to pray. And they ask, and of course, we say yes,” Greiner said. “But we don’t come in the room demanding that you bow your heads and pray with us.”

If a person is in the ICU at Memorial Health, they’re going to see a chaplain at least once during their stay. But COVID, as it so often does, complicates things.

Early on in the pandemic, Memorial turned an entire medical ICU into an ICU specifically for COVID patients. Nurses were sending their children to live with grandparents to avoid possible spread.

Chaplains are in charge of facilitating patient visits. Sometimes those visits are virtual — they hold an iPad with family members on video chat. Not long ago, Greiner did a call with 48 people as they said goodbye to a family matriarch.

But it’s not the same.

“There’s no substituting what it would be for these patients to hold the hands of their spouses or their children. But in their stead, I will hold their hands and hold the iPad over them so that their loved ones can say goodbye,” Greiner said. “And my hope is that as they are transitioning from this place to the next, that that’s what they’re hearing: the love pouring out of their family’s voices coming through the iPad to them.”

For in-person visits in the COVID ICU, adults get one visitor. For kids, it’s two.

But when they’re moved to end-of-life care, that number is expanded to five.

That’s a tough restriction for some families. Only two people can go to be with their dying loved one for 30 minutes at a time.

“Let’s say it’s a spouse, they’ve been married 50 years, they have six kids. Well, they only have four more spots left, so they have to pick their four favorite children. And then of those four, only one of them can stay with dad while mom dies,” Greiner said. “I understand the reasoning behind it. But it is no less difficult to explain over and over again, and to empathize and say how sorry you are that you can’t get everybody in.”

It can be exhausting, but Greiner’s job doesn’t stop there. Her pastoral team members aren’t the only ones putting in emotional work day after day: the nurses, doctors and staff at Memorial are in the thick of the pandemic, as well.

Greiner said while her job is patient-oriented by nature, a lot of her work involves caring for her coworkers, as well. She coordinates with Memorial’s Nurse Manager Amber Schieber to host Muffins, Moments and More, a get-together at the hospital where the staff leans on each other for support, talking through situations that affected them, Schieber said.

In the breakroom is a prayer, written by Greiner, framed by Schieber.

“Rachel has really been a rock for us during this pandemic. She’s so wonderful. She’s been there for our patients and the families and the staff,” Schieber said. ”If COVID has taught us anything, it’s to really lean on your family and your support system. And Rachel has absolutely been that for us.”

“I tell everyone, it is so important to establish a counselor of some sort, especially when you work in health care,” Greiner said. “You can’t care for other people if you’re not caring for yourself.”

For Greiner, self-care is paramount. It can take the form of a monthly check-in with a therapist or a pep talk from her family. Sometimes, it’s as simple as getting out of the house to go to her happy place: the beach.

“I have a family that supports me, my husband knows if I say it’s time to go to the beach, then it’s time to go to the beach,” Greiner said.

The emotional toll of her job is enormous, and it has been especially so for the last year. But day-in and day-out, she facilitates these sacred end-of-life rituals — these final goodbyes — for those most touched by the tragedy of COVID.

“It is difficult, but it’s also very humbling. I think that the ground we stand on at that point is very sacred, and it’s an honor to stand on it with these people and to help bridge the gap from wherever their families are to that room where they can’t be,” Greiner said. “To hold their hands and stroke their faces and tell them it’s going to be okay as they leave, it is an honor.”

Complete Article HERE!

Death Doulas Give Time To Those Running Out Of It

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Chris Bruton said his dad got sick in 2017 and just never got better.

“He had fatigue and we didn’t know what it was,” he said.

By January 2018, they had an answer.

“He actually had stage four kidney cancer,” Bruton said. “He was basically given about two to four months to live.”

When Bruton was a kid, his dad travelled a lot, so he didn’t get to know his dad that well. But after Bruton’s mom died, his dad moved from North Carolina to live with Bruton in Colorado. Bruton was in his 40s, his dad was in his 70s.

A year later, his dad got sick. Once they got the diagnosis, a woman Bruton was seeing suggested a death doula.

“And of course, I’d never heard of it. It sounded a little bit, a little bit hocus pocus-y to me,” he said. “I thought, well, I don’t think my dad would be up for anything like that.”

But then his dad started to close himself off and isolate, so Bruton agreed to meet with Cindy Kaufman, an end-of-life doula who works out of Denver. And Bruton introduced her to his dad.

He remembers chatting before Kaufman asked his dad how he was doing – how he was really doing. In an uncomfortable silence, Bruton and his aunt left to give them space.

“And as I walked out, I heard sobbing from my father that I had never heard before,” he said. “This well of stress and fear, anxiety, sadness, it all just came out.”

Kaufman came by one or two times a week, and then drove down for the end. It only took about two months. Bruton said she even helped his dad’s dog through it.

“After my dad had passed, she said, ‘Hey, let’s get Matty up here on the bed and so she can see your dad.’ And I think that even helped the dog find closure and understand what was going on,” he said.

Even though he’d never heard of a death doula before, Bruton is now a convert.

“I had no idea how much work there was to do to help someone who’s going through the dying process until I saw what Cindy did. And yeah, changed our lives,” he said. “Changed our lives and changed my dad’s life at the very end of it.”

Death doulas are also called death midwives or end-of-life doulas, but whatever you call them, their numbers have blossomed in the last decade. There’s a few in every state, but Colorado is a hotspot in the Mountain West. Beyond being a doula, Cindy Kaufman leads the Colorado End-of-Life Collaborative.

“End-of-life doulas fill what we believe is a gap,” she said.

That gap is the space between hospices, which provide necessary medical care, and what she does – help someone with the actual process of dying.

Since the hospice industry started in the ’70s and ’80s, Kaufman said, it’s become more of a business with certain hours and staff caring for multiple clients. While they started as non-profits, the majority of hospices are now for-profit institutions.

“We don’t carry those kinds of case-loads, we work for (ourselves),” she said, comparing death doulas with hospice staff. “We don’t fall under insurance, we’re private pay.”

Kaufman said death doulas can bring ritual back into dying, and make it easier to say goodbye.

They can help plan legacy projects, say late-night prayers, figure out what kind of burial or cremation someone wants. For some, they just sit with people, right up to the end.

And death doulas are incredibly diverse, not only in what they offer but with their backgrounds. There’s no licensing requirement or mandatory training. Kaufman said some people use their own culture to inform how they practice as death doulas, and they don’t want more regulations.

“They want to be honored for the fact that they were trained within their own family and community to do what they do,” she said.

Still, several training centers have cropped up in recent years. Some are in places like Australia and the UK. And there’s one in New Jersey called the International End Of Life Doula Association, or INELDA.

Henry Fersko-Weiss is a death doula who created INELDA six years ago.

He said it’s good to take other cultures into consideration, but the profession needs standardization if they want to be reimbursed by Medicare or Medicaid. He said that could also improve quality of care – and help the fledgling profession evolve and gain trust.

“Anybody could call themself a doula without knowing anything, without having any training,” he said. “And I think that can do a disservice to the development of this field.”

Nancy L. Compton is an INELDA trainer based in Boise, Idaho. She’s also a certified hospice nurse assistant, palliative nurse assistant and death doula.

She’s proud death doulas can work outside normal constraints.

“Not everybody is born nor dies Monday through Friday, 8 to 5,” Compton said.

But she’s also proud of what her intimate knowledge of the dying process does for families.

“That’s where I am different and that’s where I pioneered this, especially in the Boise Valley,” she said.

Compton said a hospice paid her to practice there, and that’s unusual for a death doula. Medicare sanctions death doulas, but won’t reimburse for their care – yet. That would require a lot more standardization.

Deb Rawlings, at least, is fascinated by the diversity in this budding industry.

“It was amazing to find that there were so many differences in what the death doulas say that they do and what they offer,” she said.

Rawlings teaches palliative care at Flinders University in Australia. She’s one of the few people who’ve researched the occupation.

She found that many death doulas are former hospice workers or nurses. Some volunteer, others charge. Some help with a spiritual journey, others help with more physical tasks.

But even though they’re so different, death doulas have generally described their role to Rawlings like this: “We’ve got time. So I’ve got time to come in and sit with you. I might sit with the person who’s dying and let their family go and have a break. I might help and do the washing.”

In other words, they give time to those who are running out of it.

Complete Article HERE!

We all hope for a ‘good death’.

But many aged-care residents are denied proper end-of-life care

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Death is inevitable, and in a civilised society everyone deserves a good one. It would therefore be logical to expect aged-care homes would provide superior end-of-life care. But sadly, palliative care options are often better for those living outside residential aged care than those in it.

More than a quarter of a million older Australians live in residential aged care, but few choose to be there, few consider it their “home”, and most will die there after living there for an average 2.6 years. These are vulnerable older people who have been placed in residential aged care when they can no longer be cared for at home.

The royal commission has made a forceful and sustained criticism of the quality of aged care. Its final report, released this week, and the interim report last year variously described the sector as “cruel”, “uncaring”, “harmful”, “woefully inadequate” and in need of major reform.

Quality end-of-life care, including access to specialist palliative care, is a significant part of the inadequacy highlighted by the report’s damning findings. This ranked alongside dementia, challenging behaviours and mental health as the most crucial issues facing the sector.

Longstanding problem

In truth, we have already known about the palliative care problem for years. In 2017 the Productivity Commission reported that end-of-life care in residential aged care needs to be better resourced and delivered by skilled staff, to match the quality of care available to other Australians.

This inequality and evident discrimination against aged-care residents is all the more disappointing when we consider these residents are among those Australians most likely to find themselves in need of quality end-of-life care.

The royal commission’s final report acknowledges these inadequacies and addresses them in 12 of its 148 recommendations. Among them are recommendations to:

  • enshrine the right of older people to access equitable palliative and end-of-life care
  • include palliative care as one of a range of integrated supports available to residents
  • introduce multidiscpliniary outreach services including palliative care from local hospitals
  • require specific training for all direct care staff in palliative and end-of-life care skills.

What is good palliative care?

Palliative care is provided to someone with an active, progressive, advanced disease, who has little or no prospect of cure and who is expected to die. Its primary goal is to optimise the quality of life for that person and their family.

End-of-life care is provided by palliative care services in the final few weeks of life, in which a patient with a life-limiting illness is rapidly approaching death. This also extends to bereavement care for family and loved ones.

Unlike in other sectors of Australian society, where palliative care services are growing in line with overall population ageing, palliative care services in residential aged care have been declining.

Funding restrictions in Australian aged-care homes means palliative care is typically only recommended to residents during the final few weeks or even days of their life.

Some 70% of Australians say they would prefer to die at home, surrounded by loved ones, with symptoms managed and comfort the only goal. So if residential aged care is truly a resident’s home, then extensive palliative and end-of-life care should be available, and not limited just to the very end.

Fortunately, the royal commission has heard the clarion call for attention to ensuring older Australians have as good a death as possible, as shown by the fact that a full dozen of the recommendations reflect the need for quality end-of-life care.

Moreover, the very first recommendation — which calls for a new Aged Care Act — will hopefully spur the drafting of legislation that endorses high-quality palliative care rather than maintaining the taboo around explicitly mentioning death.

Let’s talk about death

Of course, without a clear understanding of how close death is, and open conversation, planning for the final months of life cannot even begin. So providing good-quality care also means we need to get better at calculating prognosis and learn better ways to convey this information in a way that leads to being able to make a plan for comfort and support, both for the individual and their loved ones.

Advanced care planning makes a significant difference in the quality of end-of-life care by understanding and supporting individual choices through open conversation. This gives the individual the care they want, and lessens the emotional toll on family. It is simply the case that failing to plan is planning to fail.

We need to break down the discomfort around telling people they’re dying. The unpredictability of disease progression, particularly in conditions that involve frailty or dementia, makes it hard for health professionals to determine when exactly palliative care will be needed and how to talk about it with different cultural groups.

These conversations need to be held through the aged-care sector to overcome policy and regulation issues, funding shortfalls and workforce knowledge and expertise.

We need a broader vision for how we care for vulnerable Australians coming to the end of a long life. It is not just an issue for health professionals and residential care providers, but for the whole of society. Hopefully the royal commission’s recommendations will breathe life into end-of-life care into aged care in Australia.

Complete Article HERE!

Caring for a dying loved one

There’s no denying that caring for a dying loved one is a heart-wrenching experience. Through specialized quality care, however, patients and their families can continue to share meaningful moments, despite a terminal diagnosis.

Every year, hospices and palliative care centers across the nation unite to raise awareness of available options for end-of-life care. How does hospice and palliative care work? Hospice and palliative care maximize the quality of life of people with advanced or life-limiting illnesses through pain management, symptom control, psychosocial support and spiritual care, among other means.

What can you do to help?

Understanding what to expect and what you can do to increase a patient’s comfort level can help ease their suffering. Consider their unique physical, emotional and psychological needs.

• Re-adjust pillows beneath their head to help with labored breathing.

• Be calm and reassuring. Remind your loved one where they are and who is present. Seek help from a medical team if significant agitation occurs.

• Maintain a comfortable room temperature. Provide warm blankets in case of a chill or install a humidifier in a moisture-deprived room.

• Encourage your loved one to communicate unsaid thoughts. Ask open-ended questions about their beliefs or meaningful life moments.

• Seek clarity about the type of care your loved one wishes to receive, in case they can no longer speak for themselves.

• Invite family members and close friends to show their support and say their farewells.

Is someone close to you facing a serious or life-limiting illness? Visit www.nhpco.org for caregiver assistance and resources.

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