Tag: End of Life Care

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‘Natural death may not be kind, easy or peaceful for pets’

Cruel to be kind: animal hospice gives pets better way to die

To help pet owners make decisions about end-of-life care, Villalobos developed a decision tool based on seven indicators. The scale is often called the HHHHHMM scale.

By Tara Parker-Pope

Nearly 14 years ago, my daughter and I were grieving the death of my mother, and it seemed nothing could lift our spirits. Then we got Fluffy, a bouncing bundle of gray and white puppy, and everything changed.

Fluffy kept us busy with pee pads and squeaky toys. She made us laugh in spite of our sadness, and the gray clouds of grief began to recede

Over the years, our 10lb fluff ball was a constant in our lives. We dressed her up in holiday sweaters, celebrated her birthdays and scolded her for sneaking food from the cat’s dish. But in recent weeks, as our walks slowed down and her naps grew longer, it became clear that our time together was limited. I hoped that in the end, Fluffy would have a natural death, drifting off to sleep for good on her favorite pillow

A natural death is what many of us hope for with our pets. They are members of our family, deeply enmeshed in our lives, and for many of us, thoughts of euthanasia seem unfathomable, so we cling to the notion that a natural death is desirable.

In most cases, a natural death, she said, means prolonged suffering

But my veterinarian said that my end-of-life scenario for my dog wasn’t realistic. In most cases, a natural death, she said, means prolonged suffering that we don’t always see, because dogs and cats are far more stoic than humans when it comes to pain.

Dr Alice Villalobos, an oncology veterinarian in California, said that many pet owners idealise a natural death without thinking about what a “natural” death really means. A frail animal, she noted, doesn’t linger very long in nature. “When animals were domesticated, they gave up that freedom to go under a bush and wait to die,” Villalobos said. “They become very quickly part of mother nature’s plan due to predators or the elements. And yet in our homes we protect them from everything so they can live a long time – and sometimes too long.”

I had reached out to two at-home vet services that both offered compassionate guidance and confirmed my fears that no treatments were available to improve her condition

Villalobos has dedicated her career to helping pet owners navigate end-of-life issues. She created an animal hospice program she calls “pawspice.” She coined the name because she doesn’t want to confuse end-of-life care for animals with the choices we make for human hospice.

Her program is focused on extending a pet’s quality of life. That might mean treating a cancer “in kind and gentle ways,” she said. It can mean supportive care like giving fluids, oxygen or pain medication. In some cases, it might mean hand-feeding for frail pets or carrying an animal to a water dish or litter box. And finally, she said, it means a “well death.”

Villalobos has advocated what she calls “bond-centered euthanasia,” which allows the pet owner to be present and play a comforting role during the procedure. She has also championed sedation-first euthanasia, putting the animal into a gentle sleep before administering a lethal drug.

To help pet owners make decisions about end-of-life care, Villalobos developed a decision tool based on seven indicators. The scale is often called the HHHHHMM scale, based on the first letter of each indicator. On a scale of zero to 10, with zero being very poor and 10 being best, a pet owner is asked to rate the following:

HURT Is the pet’s pain successfully managed? Is it breathing with ease or distress?
HUNGER Is the pet eating enough? Does hand-feeding help?
HYDRATION Is the patient dehydrated?
HYGIENE Is the pet able to stay clean? Is it suffering from bed sores?
HAPPINESS Does the pet express joy and interest?
MOBILITY Can the patient get up without assistance? Is it stumbling?
MORE Does your pet have more good days than bad? Is a healthy human-animal bond still possible?

Villalobos said pet owners should talk to their vet about the ways they can improve a pet’s life in each category. When pet owners approach end of life this way, they are often surprised at how much they can do to improve a pet’s quality of life, she said.

By revisiting the scale frequently, pet owners can better assess the quality of the pet’s hospice care and gauge an animal’s decline. The goal should be to keep the total at 35 or higher. And as the numbers begin to decline below 35, the scale can be used to help a pet owner make a final decision about euthanasia.

“Natural death, as much as many people wish it would happen, may not be kind and may not be easy and may not be peaceful,” Villalobos said. “Most people would prefer to assure a peaceful passing. You’re just helping the pet separate from the pack just as he would have done in nature.”

Complete Article ↪HERE↩!

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Hospice Care & Palliative Care – When to use Them

Hospice a word that is synonymous with “end of life” care. Palliative – a little more confusing and often confused with ‘end of life’. The two are very different therapies but Palliative Care is an offshoot of Hospice.

by Petr Horcik

Hospice is a service for patients who are terminally ill and have decided not to take any more medication that might “cure” them (i.e. chemotherapy for a cancer patient). The focus becomes relief from pain and symptoms and not a cure. There are some who say that going into Hospice means you’re giving up or that you will no longer receive the medical care you need. That is not true – you have chosen to focus on your quality of life not the quantity and the medication used is to do just that.

A Hospice team usually includes a doctor, nurse, social worker and chaplain (if you wish). They work together to meet the patients physical, emotional and spiritual needs. This team also cares for the family who can be against the choice to, in their eyes, “give up.” There is counseling, hugs and support from a good Hospice team – my Mother’s team was unbelievable and supported and counseled our entire family through the last three days of her life.

To qualify for Hospice your doctor must state that the patient’s death is expected in 6 months or less. If a patient chooses Hospice then changes his or her mind it isn’t an issue. The patient simply goes back into the curative therapy with their doctor. You can also change your mind again and be readmitted . . . there is no pressure – it’s about what you, the patient want.

Palliative Care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the pain, symptoms and stress of a serious illness for both the patient and family.

Again, it’s a team of specially-trained doctors, nurses and other specialists who work in partnership with the patient’s other doctors to provide an extra layer of support. It can be used at any age and at any stage in a serious illness. The services are offered in tandem with the curative treatment. A good example of Palliative Care use is in Parkinsons or Multiple Sclerosis when there are flare ups.

Both Hospice and Palliative Care are paid for by most insurance companies including Medicare and Medicaid. Both are offered in your home, nursing homes, assisted living centers, hospitals and provide respite care when the caretaker family needs a break.

What these two services offer us are choices in treatment for serious illnesses. We each have our own journey and whilst none of us hope it comes to either of these services, we can make informed decisions for us or our loved ones knowing that they exist. No matter how strong you are physically and emotionally – watching a loved one suffer is often intolerable. There are teams out there to support and comfort. Use them if you need them.

Complete Article ↪HERE↩!

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7 ways to help a loved one with dementia reclaim joy

Music, art, good food—there are many ways to brighten the day of a person with dementia

By

Your loved one has dementia. It’s hard, for them and for you.

Tia Powell, author of Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End, acknowledges that the advanced stages of dementia are frightening.

But she says that fear of those late-stage declines can prevent us from helping our loved one make the most of the days when they are still able to spend time with family and friends, enjoy activities, and be part of the wider world.

Powell is the director of the Montefiore Einstein Center for Bioethics in New York and her expertise includes dementia treatment and end of life care.

Powell’s own grandmother and mother died from dementia. In her research, she came across a phrase that resonated with her: Every remaining day should be a good day.

“I love the sound of that,” she says.

Here are seven ways you can help your loved one with dementia find joy in their remaining days:

1. Look forward, not back

So many people are grieving the loss of the person their loved one used to be. “We think, ‘This is so terrible, my mother is no longer a great mathematician,’” Powell says.

As difficult as it is, you need to try to accept that your loved one isn’t the person they once were and try to embrace who they are, she says.

When you’re focused on who your loved one used to be, you can inadvertently shame them. If you say things like, “That’s not like you,” or “You don’t need help with that” you can end up embarrassing your loved one, she says.

2. Think beyond safety

When your loved one is in the earlier stages of dementia, you may think they can safely stay home alone. But safety isn’t the only concern. Your loved one might be spending hours staring out the window or watching TV.

“Family members get into denial and don’t want to address the fact that it’s not really okay to leave them home alone all day,” Powell says.

You don’t necessarily have to look at residential placements. Your loved one could get out and do things with other people in a day program a couple of times a week, she says.

3. Get care for other medical conditions

To help people with dementia get the most out of every day, it’s important to make sure other medical conditions are well controlled.

A family member or companion might need to accompany your loved one to medical appointments.

That’s because a person with dementia might not accurately report problems. They may forget that they fell recently, or not notice that they are getting out of breath more easily than they used to.

And, a person with dementia might forget what the doctor says. If their doctor changes their medication, for example, they need to remember to both stop the old prescriptions and start the new ones.

“They need someone to be external memory for them,” Powell says.

4. Boost joy with good food

“Food is often one of the last remaining pleasures,” Powell says. Plus, food can be an important part of family celebrations and culture. She feels that as people with dementia age, it’s time to lighten up on the food rules.

“If I’m 94 and have dementia, I don’t really care about my cholesterol,” she says. “I want to order up an ice cream sundae if I feel like it.”

“When you’re younger and worried about protecting your cognition, I think it’s appropriate [to make healthy food choices],” she says. “Once [dementia] is moderate to severe I would not overly restrict. I think then you can make some tradeoffs.”
5. Help them keep moving

“Exercise is one of the few things that everybody agrees helps prevent speeding of cognitive delays,” Powell says. “And it’s another way to get that happy feeling.”

Complete Article ↪HERE↩!

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‘People have been frightened for me to tell their loved one they’re dying, in case they die quicker’

An intensive care doctor has written an honest book about her experiences.

NONE OF US want to end up in intensive care. But if we do, we should hope we end up with a doctor like Aoife Abbey.

The UK-based Irish doctor has written a book about what it is like being an intensive care doctor, exploring the emotional moments she has experienced. It’s a book that might just change how you think about death – and how you talk to your family about it.

After reading the book, Seven Signs of Life, you’ll want to sit down with your nearest and dearest to discuss what might happen to you should end up needing intensive care. Talking about death or serious illness is a taboo that still persists, but Dublin-born Abbey – who is in her mid-thirties – wants us to confront it.

“I appreciate people need to talk about death more because what I often say is, people come into intensive care, they don’t know they’re going to be there – it’s a surprise to everybody, they’ve had an accident or something,” she explains. “And you say to their family ‘what do you think they would have wanted?’ And the answer is ‘God, I don’t know. We haven’t talked about it.’ Why would you?”

This avoidance can lead to big questions being unanswered. “How would the patient feel about risking being alive and not being able to talk, how would they feel about organ donation? There’s lots of things people don’t discuss, and I think we need to discuss them more,” says Abbey, who graduated from the University of Warwick in 2011.

She advises people to have those difficult conversations with loved ones. “But what I would say is that it can often be difficult to imagine yourself in situations, so people might say ‘oh I would hate to have dementia. I’d rather just drop off.’,” she cautions. “When actually they don’t know that it’s true, because they’re not in that situation. So I think we have to be careful when we have conversations about life and death and what you’d like, in that we’re having general conversations and that we’re still not trying to pigeonhole people into certain decisions.”

Because often people will say ‘I would hate to live this way’ but actually then find an amount of joy and contentment living that way in the end because they have no other option. It is a difficult conversation.

“I guess in Ireland there’s always that thing of people say ‘don’t tempt fate’,” she says. Abbey and her family have had to deal with serious illness themselves. Her brother, Aaron, was a disability rights campaigner and died in October 2018. He was in and out of hospital a lot while the siblings were growing up.

“I’ve certainly had encounters where people have been frightened for me to tell their loved one that they are dying. And not just because they were worried that it would upset them emotionally, which is a very valid worry and I would worry the same thing,” says Abbey.

Because they would feel like that would mean they would die quicker. That crops up quite a lot, people say don’t tell them, because they’ll just give up.

‘It’s routine… until it isn’t’

The book was inspired by anonymous columns Abbey wrote for the British Medical Association, and the stories of the patients in the book are anonymised and amalgamated.

“I always loved intensive care and I loved it because there’s a lot of science there, you get to be specific, you get to care about the numbers,” says Abbey. “You have a lot of facilities, you know the nursing to patient ratio is one to one or one to two, you have all the numbers in front of you, everything is quite scientific.”

At the same time, this is juxtaposed against “the massive uncertainty of not knowing what somebody’s outcome is going to be”.

The level of pressure and responsibility builds the longer you work in intensive care.

There’s always an opportunity to ask for help. You learn as you go along and that’s how we do it, so it was never the case where I had to walk into an ICU and make loads of decisions.

She says that like everything in medicine, “all of this stuff is routine until it isn’t”. Indeed, in the book she details times when things did not go to plan. “If you intubate 100 patients and 99 of them are perfect, easy … it’s the one that’s difficult that’s the issue. So most things are routine, there’s always the potential for it not to be.”

When it comes to errors, the onus is on the doctor to make sure they learn from it.

“There’s nothing that makes you learn more than making a mistake,” she says. “You’re unlikely to ever do it again.”

The main thing is there is a culture, and it’s the right culture, where we don’t blame people when they make mistakes. And we’re supposed to recognise it’s a systems failure, and there’s lots of different explanations for why things go wrong, and it’s rarely one person’s issue; one person’s fault. But at the same time you have to figure out ways as a doctor to still accept and be OK with the fact also that you did make a mistake.

She includes in the book an incident where she missed something on a chest x-ray. It must have been nerve-wracking to write about when she first included it in a Secret Doctor blog post.

“It is still in numbers their most read blog. So it’s … I’m not going to say vindicated but there’s a need for that kind of discussion and people clearly had an interest or it struck a chord with them.”

She has never worked with the HSE, and describes the NHS as something that’s very much woven into national identity in the UK. “You have this service that’s free at the point of care, and people are very proud of it. It’s a very emotive topic,” she says, noting that “it doesn’t matter how angry the media is with the NHS at a given point, patients that I see behave the same. Most of them they are grateful, they’re frightened, they’re scared – they are just people, they are separate from political issues.”

Speaking of political issues, the big one for NHS workers and Irish emigrants like Abbey is Brexit. “If I wasn’t from Ireland I would have a huge amount of uncertainty and I’d be very worried,” she says. “You don’t really know what’s going on. You take so much for granted.”

But it’s not something that she lets take over her work. “I think you just learn to be very focused on what you’re doing. You have to let things in in the moment or else you’re not human, and you can’t engage with someone who’s being very emotional with you with a wall in front of you, because it’s not human and it’s not very nice for them either.”

She has learned to talk to her colleagues and friends about things that affect her, and not keep it bottled up. This is her eighth year in training, and in August 2020 she’ll be able to pursue a consultant job.

In the book she details very tender and emotional moments, such as when a dying man asks her to lift his head up so he can talk to her properly. It’s those intimate moments that leave an impact on her.

“There’s things you get exposed to but I guess in the moment it’s so much about what that person is feeling, you do feel a little bit humbled by the fact that you’re able to give them anything,” she says.

Because they’re going through something that is horrible. And you put it aside until you get home, or until you close the door of the room.

Seven Signs of Life is out now, published by Penguin Random House.

Complete Article ↪HERE↩!

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Horny Hospice

Sometimes ya just gotta laugh through it all.

“It’s not your grandparents hospice.”

You may be on life support, but your sex life doesn’t need to be.

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The way we die will be considered unthinkable 50 years from now

How we treat dying people needs to change.

By Haider Warraich

Fifty years ago, a physician was admitted to the hospital with stomach cancer. He wrote down in his own medical chart that he did not want CPR or to be connected to a breathing machine. His wishes were disregarded — he underwent CPR numerous times and was connected to a breathing machine until he died. Back then, not only were people treated in ways they did not want, many patients were also arbitrarily denied potentially lifesaving therapies.

Doctors decided who deserved to live or not: In one New York hospital, doctors put purple stickers on the charts of patients they determined would not receive CPR or other similar measures without the patients’ or their families’ knowledge. Decisions about life and death were subjective and opaque.

End of life care has considerably improved since then. Patient preferences now help direct physicians and nurses about what type of care they would want to receive. But 50 years into the future, we will look back on today and conclude that medicine was sorely lacking when it came to how we handle death.

Many in medicine, as well as patients and caregivers, continue to equate more procedures, more chemotherapy, and more intensive care with better care. Studies in patients with cancer and heart disease, the two greatest killers of mankind, show that patients receiving palliative care, which is an approach that focuses on quality rather than quantity of life, can actually live longer. While the goal of palliative care is to help people with a serious illness live as well as possible — physically, emotionally and spiritually — rather than as long as possible, some people receiving palliative care might also live longer since they avoid the complications associated with procedures, medications, and hospitalization

In addition, while medical advances have moved forward at blinding pace, the ethical discourse surrounding many technologies has not kept up. Take, for example, cardiac devices such as pacemakers and mechanical pumps that can be placed in the heart. Many patients with terminal illnesses who want to deactivate these devices find resistance from the health system, since some continue to equate deactivating them with euthanasia. We need to continue to make sure that even as technological advances blossom, patients remain at the center, and physicians continue to honor their wishes.

And while the palliative care specialty has greatly improved end-of-life care, too often, palliative care has been used as a way to avoid the culture change needed by all medical specialties to better handle death. Despite its many benefits, many patients and physicians are scared of “palliative care” because of its strong association with the end of life. Some have been compelled to change the title of their practices to “supportive care.” To many patients, the very name “palliative” implies that they will be abandoned, making them very reluctant to accept their services. The fact is that palliative care can, and should, be delivered to patients with serious illness alongside conventional care.

But the issues go beyond the name — one recent study showed that palliative care-led meetings with families of patients in intensive care units led to an increase in post-traumatic stress disorder symptoms among family members. Palliative care specialists are often consulted in tense situations when patients are critically ill, and they often have no prior relationship with patients or their families, who might be unprepared to have serious discussions with them. That’s why most of these difficult conversations should be delivered by the doctors and surgeons primarily responsible for treating the patients. One study estimated that by 2030, the ratio between palliative care specialists and eligible patients will be 1 to 26,000. Palliative care specialists cannot be entirely responsible for end-of-life care by themselves.

To emerge on the right side of history, the entire culture of medicine needs to be turned around. End-of-life care is not just palliative care’s business. It is everyone’s business, from emergency room doctors to primary care physicians. Physicians need to abandon outdated ideas that their role as healers is incompatible with helping patients die comfortably and on their own terms. Helping patients die well is as important as helping them live to the fullest.

Complete Article ↪HERE↩!

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The myth of ‘no place like home’ when it comes to end of life

In a new study, MU researchers uncovered several themes that expose the challenges that are often not included in conversations about dying at home.

by University of Missouri-Columbia

She died at home, but it wasn’t the romantic scene found in movies, where the family held her hand and she simply closed her eyes. In reality, there was a night when she had diarrhea 12 times. In reality, every time she had to be moved she was in pain. This was how a caregiver described caring for her mother as she died at home to social scientists studying end-of-life decision-making.

In a new study, Jacquelyn Benson, assistant professor of human development and family science at the University of Missouri, found that home deaths can be physically and emotionally challenging, especially for caregivers.

“The realities of a home death experience present challenges for family members, especially those with limited resources and social support,” Benson said. “It is important that people understand that home death does not automatically equate a good death.”

In recent decades, there has been a groundswell of social movements championing the ideal of dying at home. According to the Centers for Disease Control and Prevention, home deaths in the U.S. increased nearly 30 percent from 2000 to 2014, while deaths in hospitals, nursing homes and long-term care communities dropped.

To study how home deaths might impact caregivers, Benson along with fellow MU researchers Benyamin Schwarz, Ruth Brent Tofle and Debra Parker Oliver, captured stories from caregivers to identify common themes surrounding the experiences of home deaths. Through the in-depth interviews, the researchers uncovered several themes that exposed the challenges that are often not included in conversations about dying at home. In some cases, challenges arose because there was uncertainty for the decision maker, and some caregivers were not prepared for making decisions regarding the end of a loved one’s life.

The researchers also found that financial resources and strong relationships can help in differentiating good deaths from bad ones. Researchers found that the “good” death experiences involved high levels of emotional support for the dying individuals and the caregivers, and that the place of death played less of a role.

“A few well-known sayings about home are relevant to our findings,” Benson said. “For instance, many people believe there is ‘no place like home,’ which suggests the physical space we call home is paramount when it comes to our comfort. However, another saying, ‘home is where the heart is’ suggests that the essence of home can be replicated in less familiar spaces. When making end-of-life decisions it is important to remember that death can be quite gruesome and that it might be easier on both the dying individual and the caregiver to make a plan that carries the concept of ‘home’ to wherever they might be.”

“The motivations and consequences of dying at home: family perspectives,” was published in a special issue of the Journal of Housing for the Elderly on Environments of Dying, Death, and Caregiving at End-of-Life. Benson served as guest editor for this special issue.