‘A good death’

Nurse pioneers a better way for elders to die

Nurse practitioner Nikki Johnston has been awarded the inaugural Health Minister’s Award for Nursing Trailblazers.

By Steve Evans

Nikki Johnston is passionate about dying.

She’s just won a big prize as Australia’s most innovative nurse. It was a recognition of the way she is changing the way the elderly end their lives.

Her mission as a nurse in Canberra is to help people have what she calls “a good death”.

She says too many people have “bad deaths” where fear and loneliness dominate their last moments.

Her radical idea is to involve people who are in their last months in the planning for those final fearful moments. The dying attend meetings where their own deaths are discussed.

She says a rigorous study of the results of the new system demonstrates clearly that it is a better way, and she’s pressing politicians to adopt it in the rest of Australia and beyond.

She also thinks there is too much emphasis on research to prolong lives at the expense of spending more to ensure that people die in peace at the right age.

Ms Johnston is a “nurse practitioner” who works in palliative care – it’s the most senior type of nurse, qualified to diagnose illnesses and prescribe drugs and treatments.

She has a missionary zeal for involving the patient in (arguably) the most important process affecting them – their end.

In the residential homes where the system is now used, the dying person attends the meetings and hears how their death will be dealt with. Their views are listened to and acted on.

“If we don’t ask the questions and give people the opportunity to talk about the end of life, we risk isolating people in their last months,” she says.

“They feel like no one gets it – no one understands – what’s going on, and that can be frightening.”

Researchers have studied 1700 people in the ACT at the end of their lives, comparing those where the system is in operation and those where it is not.

The study – the first of its kind in the world – involved rigorous measurement of a raft of variables like how soundly people slept in their last months and how much medication they needed.

The researchers devised a “quality of death” index. Ms Johnston says the results show that the new way works.

She argues that there should be a switch from maintaining uncomfortable and painful lives to the quality of death. “People are living longer but their quality of life is reduced so they are not living well enough or dying well enough,” she says.

“We are not valuing the end of life because we are not putting money into it.”

With the new system, people aren’t told bluntly that they are dying.

Ms Johnston says that she might have a conversation with a resident of an aged care home and ask them how they saw their future. In that conversation, the old person might well say that they thought they were dying.

“I ask them where they are at, what’s important, and most people tell me they are dying,” Ms Johnston says.

“If they are leading this conversation, It’s not confronting. They have taken us there.”

“Gently, we normalise death and dying. We help the staff to be able to talk about it. We support the relatives and loved ones through the process.”

She said that the elderly people she deals with generally don’t fear death. “Most people are ready. They are sick and they’ve had enough. They are ready to go.

“To help someone in their last months of life, we need to know them – to sit with them and talk to them. We need to know what’s important. How do we get this right for the person?”

That is what happened, for example, with Chris Dillon, whose death on March 29, 2017 was peaceful, according to her daughter Rose.

Chris Dillon and family dog, “Dublin”.

The aged mother had been in a residential home in Ainslie for just over two years.

According to her daughter, Mrs Dillon said one day that she felt tired and she was close to the end of her life.

Once that was recognised, the palliative care team became involved.

“She was a pragmatic person,” Rose says.

“She wanted to know what it would feel like, would it hurt, how would people know that she was dying. What would they do with her body?

“And then Nikki came along. She sat down really close to Mum and said: ‘I’m Nikki. I’m from palliative care and we need to talk about some things’.”

According to Rose, her mother simply replied: “What? About me dying?”

“So the conversation started naturally,” she says.

“The impact that Nikki had on Mum’s death was massive. It allowed Mum to have a peaceful death.

“She wasn’t frightened.”

The new system involves staff keeping a kind eye on residents

At the Calvary Haydon Retirement Community in Bruce, for example, manager Kim McGovern says she and her staff quietly look at residents every month to see “who might not be there next month”.

Kim McGovern of Calvary Haydon Retirement Community in Canberra.

Once people are identified, they are talked to sensitively.

An “individual care plan” is drawn up with the involvement of the resident.

“It’s their choice. We involve them early on,” Ms McGovern says. “It’s their last journey.”

The involvement of the dying person allows proper preparation, both medically and emotionally.

This means a final crisis, in which the patient is rushed to hospital to die in a chaotic emergency, is less likely.

Ms Johnston is an extraordinary character – bright and vivacious (at least when she’s expounding on the importance of helping people have “a good death”).

She may have dark moods, in that she says she needs to put her “armour” on before she attends some deathbeds.

And she does cry – after all, she’s got to know the person – but, as she puts it, “this isn’t my grief”.

“The grief belongs to the family,” she says.

Complete Article HERE!

Comparatively few African Americans make end of life plans

By Glenn Ellis

The entire lifespan of most African Americans is consumed by efforts to overcome obstacles, inequality, and in many cases, institutional racism.

The most difficult point in this most tiring journey is often the end-of-life. For the disproportionate number of us is when death is accompanied by the dilemmas around how we choose to die.

Hospice; Palliative Care; Advance Directives; and Compet-ency become terms that we, or our loved ones, all of a sudden are faced with and expected to deal with.

Studies and observations show that, likewise disproportionately, we are not prepared for this final stage of life.

What we know is that African Americans are less likely than any other group to be prepared for end-of-life, and not surprisingly, are less likely to have a prepared Advance directive.

First, let’s talk about Advanced Directives. This is the document that should be prepared to outline, in detail, what type of care (if any) we desire as our lives come to an end, and we are not able to make decisions for ourselves.

An Advanced Directive includes things that typically are not even thought about during times when life is good.

Generally, it will include things such as a living will or do-not-resuscitate order, or in identification of a health care surrogate. Regrettably, it’s not until we are in a hospital ICU; Hospice Center; or even on Home Hospice that we (or our loved ones) are confronted with having to make difficult decisions, while dealing with imminent death.

In spite of the fact that studies show that 80 percent of Americans would prefer to die at home, the reality is that 60 percent of us will die in a hospital; 20 percent of us will die in a nursing home; and only 20 percent will end up in a situation where we will be able to make our transition in the comfort and peace of our own home.

If you are not competent, or capable, to make medical decisions but do not have an advance directive, or it is unavailable when needed, decisions will nevertheless have to be made.

In 2013, The Pew Foundation did a study and found that while 73 percent of all Americans have given “some thought” to end-of-life, only 37 percent of African Americans have done the same. This means that doctors and others on the care team of a terminally-ill patient may decide to continue providing care and treatment, when you may feel that your loved one has had enough, and should be allowed to die in peace, with dignity. In the absence of an Advance Directive, this could become a point of contention, and the patient is caught in the middle. Or, it could be the other way around, you may feel that there is still hope for a recovery, and the doctors feel that there isn’t. Again, the patient lies there in limbo, and often suffering unnecessarily. For African Americans, it’s worse. One study found that only 13 percent of all African Americans have an Advance Directive in place.

It can be a difficult, and often, an uncomfortable conversation, but collectively, we have to begin to have conversations during the “good” times in life with our families and loved ones about what we do and don’t want should we ever find ourselves in a position where we are unable to make medical decisions for ourselves.

Think about how often we attend funerals, and families are still reeling over how things came to an end with conflict and contention between families of a patient who died, and the medical staff at the hospital. Think about how different it would be if we made our wishes known, before something happened unexpectedly.

A few things that may be helpful for you in getting an Advance Directive for yourself:

First you need to familiarize yourself with the term: life-sustaining treatments. Nolo’s Plain-English Law Dictionary defines this as “Medical procedures that would only prolong the process of dying or sustain a condition of permanent unconsciousness. A patient who is receiving life-sustaining treatment will die soon, whether or not treatment is administered. Life-sustaining treatment may include a respirator, cardiopulmonary resuscitation (CPR), dialysis, surgery, and other medical procedures.” Would you want any of these? If so, under what circumstances?

Most importantly, let your loved ones know what you have in your Advance Directive. People only like surprises for their birthdays. Don’t wait for them to find out at an emotionally difficult time, when they are grappling with the inevitability of your death.

You don’t need a lawyer to create your Advance Directive. But you do need to make sure you understand the laws of the state you live in regarding Advance Directives. Some states have restrictions that you need to be aware of that may prohibit your wishes.

Complete Article HERE!

How to die the way you want

Tackling the tough questions over a cup of tea or coffee

By

We’re all dying, every one of us.

But we learn early on that despite the fact our lives are universally finite, most people don’t want to talk about it.

We’ll talk sex, we’ll talk drugs, we’ll even talk money—but not death.

That could be changing with the proliferation of so-called Death Cafes, informal get-togethers in cities across America, Europe and Asia, where people eat a little something, drink some coffee maybe and talk about, well, the inevitable.

The mission is to revamp typically depressing and urgent end-of-life discussions to more leisurely “Everything-I-Wanted-To-Know-About-Death-But-Was-Afraid-To-Ask.”

The conversation ranges, and depends on the group of people who’ve gathered: anything from how much a funeral costs to the details of a “green” funeral (think: corpse as compost) to tips on how to talk to your family members about your own funeral.

There’s a range of people who attend, too, from someone who had a death in the family and wants to be better prepared next time, to health care providers who want a different perspective on dealing with death. They range in age from 20-somethings to 90-somethings.

The object: to turn death from a feared end to something that is part of life.

“Death Cafés change the way you live in the most profound and wonderful way,” says Kim Mooney, 67, who runs monthly meetings in Longmont, Colorado.

Mooney even held a few events in a mortuary. “I like to say it’s the only time you will walk in and walk out of one, so you might as well take advantage of it.”

Death café hosts tend to have a sense of humor.

Death on twitter

If you want to confirm the popularity of the death positive movement, just go on social media. There’s The Death Café Facebook group, which lists times and dates of meeting and has more than 50,000 likes and followers. 

Or you could follow Death Café on Twitter

Advocates say the meetings allow people a low-pressure way to express fears about the Great Unknown; to chat about the way other cultures handle death; and to share practical information, such as learning the nuts and bolts of filling out end-of-life forms.

Talking with strangers, hosts say, is often an easier way to broach the topic before launching a conversation about death with loved ones.

Lizzy Miles is a hospice social worker who hosted America’s first café in 2012 in Westerville, Ohio. She baked cookies in the shape of tombstones with grey icing and “Death Café” where the epitaph normally goes.

She is one of more than a 100 Death Café hosts in this country. She’s still hosting—and still making treats—for nearly a dozen people who show up each month.

Yes, these are the cookies Lizzy makes for her Death Café guests in Ohio.

“No one ever comes to a Death Café already uncomfortable talking about death,” she says. “If you are, you’re not going to come. We have a lot of sandwich generation people, who are taking care of their parents.”

Miles is so committed she even traveled to a Death Café in Hong Kong—“on my own dime!”—to see what it was like. 

“It was amazing, people were speaking English and Mandarin and Cantonese,” she says. “And I thought ‘Oh my gosh, all these different languages. This is pretty cool but almost exactly the same.’” 

Dos and don’ts

Anyone can be a host, but there are guidelines. The Death Café website has a set of guidelines and Miles herself was a co-author on an article that included a list of dos and don’ts in the Omega Journal of Death and Dying: 

Do: Allow a space for folks to share their ideas respectfully and openly. 

Do: Offer the opportunity for everyone to speak but allow those who want to remain silent to do so. 

Don’t: Charge an admission fee. 

Don’t: Sell death-related products. 

Don’t: Turn the group into grief support. 

Miles and others believe that confronting our mortality will prompt us to the make the sorts of life changes that some folks do only when confronted with a fatal disease. Why wait? 

Shellie Balogh, a 61-year-old hospice nurse attended one of Miles’ cafés in Ohio.

 “It wasn’t what I expected; it was more upbeat,” she says. “It’s a fun thing to do if I have a free Saturday. You go and meet people you may never see again and just have this conversation, opening up this forbidden area of discussion.” 

A midwife for dying

Suzanne O’Brien hosts a New York City group that meets at a public library on the Upper West side. She’s a nurse turned death doula.

Death doulas—part of this burgeoning “death-positive” movement—provide the same sort of bedside care, comfort and companionship that birth doulas offer to pregnant women but at the other end of the life cycle. 

O’Brien said monthly conversations tend to fit into five buckets, sometimes all five covered in one 90-minute session: 

The physical: How do I make sure I’m comfortable during my dying hours. What do I want to happen to my body? 

The financial: What forms do I need to fill out? Or how much money do I want to spend on a funeral versus, say, end-of-life care? 

The emotional: How do we deal with potential regrets or forgiveness? 

The mental: Reasoning and acceptance  

The spiritual: How do beliefs about death inform the way we live.  

One woman wanted to know how to donate her body to a medical school anatomy class. She also wanted to make sure her family would not be given the leftovers when the students are done picking her apart, something she had heard can happen. 

She told the group: “I’d rather just be flushed.” 

Banishing the secrecy

The idea of a group of a random community members chatting about death over refreshments was the brainchild of Swiss sociologist Bernard Crettaz. He launched a “Café Mortel” in 2004 in the lakeside town of Neuchâtel, Switzerland. A dozen mortal members attended. 

The point, as he once told a reporter for the Independent, a British newspaper, was to remove death talk from its “tyrannical secrecy.” 

The first cafe outside of Switzerland was held by John Underwood,  who hosted in his London basement in 2011. He’s given credit for helping the movement go global; he died last year, at the age of 44, from undiagnosed leukemia.

Today, there are death-with-food meetings in about 55 countries—including the U.K., Italy, Hong Kong, Finland, the Netherlands and New Zealand.

Becoming a regular

Those who are regulars say that while the subject matter is death, the meetings are not sad. Hosts emphasize that they are not grief support groups, more death-curious groups.

Jane Geller, a retired schoolteacher in New York City attends the Upper West Side meeting nearly every month.

“It’s a misnomer to think it’s depressing,” she said. “Death Cafés are really about life.” 

Shatzi Weisberger, an 88-year-old retired nurse from New York City is a regular, too. 

 “I was always especially interested in how we come into this world and how we leave it. When I got into my eighties, I got personally interested for my own edification.” 

Last fall, she hosted her own “FUN-eral” (pronounced Funn-eral) in the common room of her apartment building. More than 100 attendees came to the event. It sounded like a macrabe-themed birthday but she said it was a death, not a birth, party. And a way to attend her own funeral. 

She said she has planned her own green burial. “I’m going to be wrapped in a shroud and buried in the woods upstate and my body will deteriorate and something will grow.  I don’t know if it will be grass or flowers or a tree so I feel my dying is bringing life into the world. That’s not depressing at all.”

Complete Article HERE!

People with dementia and financial abuse

– the warning signs and how to avoid it

By

When most of us go online to our internet banking account and set up a direct debit to pay a bill, we probably do it swiftly without much thought. But in reality it’s not that easy. In fact, there are a lot of complex processes involved in how we manage our finances, which older people, especially those with dementia, often struggle to deal with.

Dementia affects an estimated 850,000 in the UK, with numbers expected to rise to over a million in the next few years. Each year, dementia care is costing £26.3 billion in the UK alone. Most of this involves care in nursing homes and supporting people with dementia with their daily activities.

If we look at the whole raft of daily activities a person does, such as preparing a hot drink or a meal, or doing the laundry, financial management is one of the earliest tasks to deteriorate in dementia. These processes are complex, which is why people with dementia often struggle to count change, use a cash machine, pay bills or manage tax records sometimes even before their diagnosis.

Daily activities as a whole are often underpinned by a complex network of cognition. This can include different types of memory for past and future events, so the need to remember to do a task at 8pm tonight for example, involves problem solving skills, and attention. But there are other factors that can hinder someone when performing a task, such as motor problems or their environment.

Warning signs

In a recent analysis of a large data set collected from 34 clinical centres across the US, my colleagues and I looked at what kinds of behaviour are a warning sign for problems with paying bills and managing taxes in people with dementia.

When we obtained the data set, we only looked at people with dementia living in the community, who also had a family caregiver, and a diagnosis of the three dementia subtypes: Alzheimer’s disease, behavioural-variant fronto-temporal dementia, and Lewy body dementia. We then performed an analysis using statistical models to help identify the degree to which certain factors – such as language or motor skills – can predict a particular outcome. In this case, paying bills was the outcome for one model, and managing taxes was the outcome for the second model.

We found that between 11% and 14% of the ability to manage those financial tasks is predicted by executive functioning, or problem solving skills, language, and motor problems. So this means, if a person has problems solving difficult tasks, problems with language, they fall frequently and are moving slowly, and are also more likely to also struggle with financial tasks. Slowness and falls are particularly prominent in people with Lewy body dementia, which is different to Alzheimer’s disease, the most common form of dementia.

Get prepared

This knowledge can help people with dementia. Older people, including people with dementia, can often be subject to financial exploitation. This can be through online or telephone scamming, or knocking on someone’s door trying to sell something. And when people with dementia struggle using internet or telephone banking, they may be more prone to telling strangers their bank details.

A helping hand is needed for those living with dementia to manage their finances.

One way to support people in managing their finances may be to provide training to improve their cognition. It’s important to bear in mind that dementia is neurodegenerative. So while we can help people maintain certain skills for longer, there will come a point where full support for finance tasks is needed. This could involve arranging a lasting power of attorney and naming a person that is trusted to look after financial decisions.

Another way may be to adapt the homes of people with dementia to avoid falls and allow them to move around more freely. In our analysis, we found that falls were linked to poor finance management, meaning that noticing your loved one fall more frequently than usual could be a warning sign that they may also struggle managing their finances. If we can drag out the need for full support for as long as possible, we can help someone stay in their own home for longer. And that is exactly where people feel the happiest.

Other, larger financial questions loom for people with dementia, such as inheritance and dealing with payments for formal care – both at home and in future in a nursing home. These are big financial concerns, which should be discussed once a diagnosis is made, but ideally done before. That way the person is better able to judge what they think should be done with their money, and is less likely to be financially exploited than in the later stages of the condition. The Alzheimer’s Society has also produced some good further guidelines on how to deal with financial abuse in dementia.

While it may be the last thing someone wants to think about who has just received a diagnosis, the best way to avoid financial abuse is to put things in place right away. If that isn’t motivation enough, staying independent in all sorts of activities improves well-being. And that is our ultimate goal, whether we have dementia or not.

Complete Article HERE!

Spotting Elder Abuse: Tips for Long-Distance Caregivers

From a distance, it can be hard to assess the quality of your family member’s caregivers. Ideally, if there is a primary caregiver on the scene, he or she can keep tabs on how things are going.

Perhaps you have already identified friends or neighbors who can stop in unannounced to be your eyes and ears. Sometimes, a geriatric care manager can help.

You can stay in touch with your family member by phone and take note of any comments or mood changes that might indicate neglect or mistreatment. These can happen in any setting, at any socioeconomic level. Abuse can take many forms, including domestic violence, emotional abuse, financial abuse, theft, and neglect.

Sometimes the abuser is a hired caregiver, but he or she can also be someone familiar. Stress can take a toll when adult children are caring for aging parents, or when an older person is caring for an aging spouse or sibling. In some families, abuse continues a long-standing family pattern. In others, the older adult’s need for constant care can cause a caregiver to lash out verbally or physically. In some cases, especially in the middle to late stages of Alzheimer’s disease, the older adult may become difficult to manage and physically aggressive, causing harm to the caregiver. This might cause a caregiver to respond angrily.

But no matter who is the abuser or what is the cause, abuse and neglect are never acceptable responses. If you feel that your family member is in physical danger, contact the authorities right away. If you suspect abuse, but do not feel there is an immediate risk, talk to someone who can act on your behalf: your parent’s doctor, for instance, or your contact at a home health agency. Suspected abuse must be reported to adult protective services.

Learn more about the signs of elder abuse and how to get help.

Read about this topic in Spanish. Lea sobre este tema en español.

For More Information About Elder Abuse

Eldercare Locator
1-800-677-1116 (toll-free)
https://eldercare.acl.gov

National Committee for the Prevention of Elder Abuse
info@preventelderabuse.org
www.preventelderabuse.org

National Center on Elder Abuse
1-855-500-3537 (toll-free)
ncea-info@aoa.hhs.gov
https://ncea.acl.gov

Complete Article HERE!

How to ask your parents about their estate plan

Asking your parents about their estate plan isn’t always easy, but in the end, it’s about making their wishes come to reality.

By

Making plans for the end of life is important, but it’s a topic a lot of people tend to avoid. In fact, surveys show that some 60 percent of Americans lack a will or estate plan.

Yet, if you were to ask, most of them would assure you they want to care for their family after they die. They want to safeguard the assets they’ve carefully built over the years, keep them in the family, and make sure Uncle Sam doesn’t take the lion’s share.

How do you find out if your own parents have taken care of their plans? Adult children find it challenging to talk with their parents about such things. The subject can be sensitive and emotional. You may worry about appearing self-serving. Yet, it’s important for you to have such details so that you can be better prepared.

Here are some ways to make the topic easier to broach.

1. Watch for off-handed cues, such as your father mentioning his mortality or the reference to having attended a friend’s funeral. This is an opportunity to mention that as much as you don’t want to think about it, you want to respect their wishes, should a critical health situation come into play. Do they have an advance directive and power of attorney? Tell them you need to know in order to help carry out their wishes.

2. Ask your parents for advice on your own estate plan. Inquire as to how they have handled their own will or trust, and open with such questions as, “Who is on your team of professionals for your estate?” Refer to having reviewed your life insurance policy to make sure your beneficiaries are current and ask if they have checked theirs lately to make sure their beneficiaries are up to date.

3. Set an appointment to talk with your parents. If an opening does not come up to talk about this casually, set a time with them to discuss it. Let them know this meeting is about making sure their wishes for the future are respected. When you meet, assure them that you don’t want to guess about their desires and have some questions that address some delicate but important areas.

Once the door opens for you to talk with them about this, be sure you don’t shut it quickly. Assure them you have asked for this conversation in order to make sure they are well taken care of.

Once you begin exploring the details, don’t put your parents on the defensive. Asking why your parents have decided certain things the way they have can cause sensitivity. Instead, as they share information, mirror this back to them so that they feel heard.

An example would be, “What I hear you saying, Mom, is that you prefer to be cremated rather than buried, is that right?” Take it slow, allow them to express feelings about the choices they have made for their future. If they are reticent to talk about money, tell them numbers are not important – you just want to make sure they have planned well for what lies ahead.

If you can set the stage for an honest and candid discussion, be sure you include addressing the following four things: (1) A will or trust with a coordinated estate plan; (2) an advance health care directive; (3) a durable power of attorney; and (4) a list of assets and where they store important documents you might need when the time comes.

Complete Article HERE!