At the hour of death: Unlocking the mystery of dying

By Glenville Ashby

“Dying has a funny way of making you see people, the living and the dead, a little differently. Maybe that’s just part of grieving, or maybe the dead stand there and open our eyes a bit wider.” (Susan Gress Gilmore)

Glenville Ashby

Most of us have lost loved ones. It is a painful experience that sometimes takes years to heal, if ever. Many depart suddenly without notice and we are left helpless, forlorn and confounded.

Others waste away, a slow process that is painful, difficult to watch. We are called upon to be caregivers, attending to the every need of a dying relative. During that time we learn timeless lessons if we are patient, listen, and learn from this unique experience.

Like birth, death is an integral part of life that should be accorded the right, appropriate response. On a mystical level, the dying person experiences what hospice nurse Maggie Callanan calls the “Nearing Death Awareness”.

It is a process that can take days, weeks and even months; but during that time we are afforded unique information that will help us in our own spiritual travels when we are called home.

Callahan concluded in her cross-cultural research that dying persons speak of travel, maps, trains, and of queuing up to get to another place. She also found that those she studied were not heavily sedated, nor were they speaking in fantastical terms due to any neurological, physical or physiological handicap.

In her book, Final Gifts, she writes, “… we found no common cause for what we were seeing and hearing. Our patients had many different illnesses – varieties of cancer, AIDS. In some cases, their brain oxygen, body fluid and body salt levels had been documented as normal.

“Their medications varied widely, some were taking no drugs at all, others many. In short, there was no apparent physiological explanation for their communication patterns.”

Dismiss the disjointed

Unfortunately, we sometimes dismiss the disjointed, and seemingly incongruous and incomprehensible words of the dying person, attributing it to medication, dementia, or senility.

Confused, we ask the nurse or doctor to take the appropriate medical measures to quiet the patient. Somehow, we miss the mark, missing the opportunity to ease the concerns and burdens of the patient.

When we can decode what the patient is trying to say and ably respond, we have facilitated the process of transition (dying). Patients get agitated or resigned when they are not understood. The dying process becomes longer, even more tortuous as the patient struggles to convey a message or articulate a concern.

Studies have shown that dying persons will opt to leave this earth when they are satisfied that those they are leaving behind will be all right. Others protract their departure because of guilt and the need for reconciliation. They seek forgiveness for past wrongs.

Mountain of experience

A mountain of experience has taught Callanan that many dying persons want to settle personal issues before they leave. They have a thirst for closure. “(There’s) an awareness that they need to be at peace,” Callanan writes in Final Gifts.

“As death nears, people often realise some things feel unfinished or incomplete perhaps issues that once seemed insignificant or that happened long ago. Now the dying person realises their importance and wants to settle them.” We are urged to accommodate their request.

Sadly, many engulfed in the throes of dying do not and cannot speak in literal terms. They use symbolic language.

And the more we dismiss this mode of communication as insignificant, muddled thoughts, the more the patient is likely to withdraw or display bouts of anxiety. In such situations dying is painful to watch.

On the symbolism used by dying persons, we are advised to patiently learn as much as possible and be gently and constructively responsive.

Sometimes our own fears, bewilderment and anger at seeing a loved one die only exacerbate the circumstances. We withdraw, unable to openly and honestly communicate.

Friends, unable to manage their own emotions, and lost for words, do not visit not out of insensitivity, but due to their incapacity to comprehend and deal with this highly charged emotional experience.

Studies have also shown that those at the cusp of death may see and communicate with beings invisible to us.

These visitors are usually relatives and friends who have passed on, or angels, saints and religious personages that are familiar to the patient. These visions have a calming effect and it’s obvious that these exchanges serve to make the dying process peaceful and unthreatening.

Finally, hospice nurses have encountered cases indicating that patients ‘know’ the hour of their death. Others have cited cases where healthy individuals also seem to know of their demise.

In one intriguing scenario with which I am familiar, a physically robust woman, without any prodding, suddenly rushed to prepare her will and last testament. Upon completion, she hastily summoned her son, imparting every bit of religious knowledge.

“This is the most precious gift I can give you,” she told him. She succumbed a day later.

That she consciously knew that she was going to die is debatable, and I disagree with Callahan and others who argue that “dying people often seem to know when their death will occur, sometimes right down to the day or hour (and) their attempts to share information about the time of death may be clear and direct”.

However, I am of the opinion that in most cases this knowledge is a subtle, subconscious impulse unknown to the conscious mind.

Nearing Death Awareness can be taxing, taking a toll on patient and loved ones. Openness, dialogue, honesty, patience and caring by all parties will no doubt ease the burden.

Dying and death are natural, a necessary part of life. And in the same way that we learn from the living, so we must embrace the wisdom brought forth by dying people.

Complete Article HERE!

Doctor Considers The Pitfalls Of Extending Life And Prolonging Death

By Fresh Air

[H]umans have had to face death and mortality since since the beginning of time, but our experience of the dying process has changed dramatically in recent history.

Haider Warraich, a fellow in cardiology at Duke University Medical Center, tells Fresh Air‘s Terry Gross that death used to be sudden, unexpected and relatively swift — the result of a violent cause, or perhaps an infection. But, he says, modern medicines and medical technologies have lead to a “dramatic extension” of life — and a more prolonged dying processes.

“We’ve now … introduced a phase of our life, which can be considered as ‘dying,’ in which patients have terminal diseases in which they are in and out of the hospital, they are dependent in nursing homes,” Warraich says. “That is something that is a very, very recent development in our history as a species.”

Prolonging life might sound like a good thing, but Warraich notes that medical technologies often force patients, their loved ones and their doctors to make difficult, painful decisions. In his new book, Modern Death, he writes about a patient with end-stage dementia who screamed “kill me” as a feeding tube was inserted into his nose.

“This is probably one of the encounters that I had in residency that I have been unable to shake from my memory,” Warraich says. “I think if you ask any physician, any nurse, any paramedic, they’ll have many such stories to tell you.”


Interview Highlights

On the importance of having a healthcare proxy, living will and advanced directive

One of the biggest problems that we face in not only modern society, but in societies of olden times as well, is that people have always been very afraid to talk about death. In many cultures it is considered bad luck to talk about death and it is thought to be a bad omen. I think to some extent that extends to this very day. But … I think having a living will, having an advanced directive, or perhaps most importantly, having a designated healthcare proxy, someone who can help transmit your decisions to the team when you’re not able to do so, is perhaps the most important thing that we can do for ourselves as patients and as human beings.

On giving CPR and knowing when to stop giving CPR

One of the things about CPR, Terry, is that almost everyone in medicine knows how to start CPR, when to start CPR, really what to do in CPR under even complex situations, but the one thing that almost no one really teaches us, and there are no guidelines for, is when to stop CPR. I think in some ways that is one of the biggest challenges that we in medicine face all the time. …

I was actually working in the hospital last night and it was about 3 in the morning and I was called by one of my other colleagues who was another cardiology fellow, he asked me, “Haider, I need your help. I have a patient that we are doing CPR on,” and he wanted some help from me. So I walked over to the intensive care unit, and the patient was in her 60s. … There was an entire team in the room doing chest compressions on this woman, and they had been doing it for an hour and a half at that point, much, much, much longer than most CPRs last. …

At the same time while this CPR was ongoing, the patient’s family member, her daughter, was outside the room, and she was crying. … Even though we could give her all the information … that wasn’t perhaps what she was looking for, because what we were asking her to think about or to do was one of the hardest things anyone has to ever bear, which was, “Do you want us to stop CPR?” And that’s the type of thing that I don’t think any of us can ever prepare for, especially when it’s our parent that’s involved.

On why he wrote a book about dying

I really wanted to find answers to some very, very basic questions, like what are the implications of the sort of life extension that we have achieved? What is the role of religion, not only a patient’s religion but a physician’s religion when it comes to dealing with the end of life? How is social media affecting how people experience the end of life? …

So many times I’ve found myself in the room where there are people who were so much more experienced in life than I was, yet knew so little about death and dying. And so I wanted to write a book so that people could go into those really, really difficult places and feel like they’re armed with information, that this isn’t a completely foreign territory for them and that in some way could help them navigate and deal with the sort of difficult situations that lay ahead for them.

Dr. Haider Warraich has written medical and opinion pieces for The New York Times, The Wall Street Journal and The Atlantic.

On the possible repeal of the Affordable Care Act

It is very unfortunate that health is so politicized in this country, because it doesn’t have to be. Health and wellness aren’t red or blue, and they shouldn’t be, but unfortunately that is where we are. I hope that when policies are being enacted in DC, patient’s voices, those who have benefited from the ACA, those who have gained insurance, those voices are not lost in the midst of all of this political activity.

On immigrating to the U.S. from Pakistan

I came to the United States in 2010 and [until now] have only lived in an America in which Barack Obama was the president. I think in some ways Trump’s victory has really shaken me, because of how invested I was in the idea that America is a special place, it’s a truly multicultural society. And I’m still trying to understand, I think like so many others, just exactly what happened. Especially as a writer and as a physician I’ve tried to separate myself from my identity as a Muslim. I’d rather be known as a physician/scientist/writer who happens to be Pakistani, rather than a young Pakistani Muslim immigrant who happens to be a doctor and a writer, but I don’t know. Given how things are changing, I’m not even sure if I’ll be able to set that narrative for myself. That’s a scary thought — to live an identity that is so politicized even when you wish for it to not be.

Complete Article HERE!

This Study Reveals The 5 Biggest Regrets People Have Before They Die

With just a few weeks to live, these are the biggest regrets most people have

By

[D]o you have any regrets?

Most people do.

But it appears our regrets gain a lot of weight as we approach the end of our lives.

For many years, Bronnie Ware – an Australian nurse and counselor – worked in palliative care; taking care of terminally ill people, most of whom had less than 12 weeks to live.

Her patients were typically old people with very serious illnesses, waiting to die.

And a lot of her work involved providing counseling and relief from the physical and mental stresses that come naturally when a human being comes face to face with their mortality.

Death is not a comfortable subject for most people. We prefer to not think or talk about it.

But the sad truth is, all of us will die someday.

Knowing you are going to die in a few weeks is a very bitter pill to swallow. And Bronnie noticed as her patients experienced a range of emotions that usually started with denial, and then fear, anger, remorse, more denial, and eventually, acceptance.

As part of therapy, Bronnie would ask about any regrets they had about their lives, and anything they would do differently if life gave them a second chance.

Of all the responses she got from her patients, she noticed there were 5 regrets that stood out. These were the most common regrets her patients wished they hadn’t made as they coursed through life.

But the regrets of the dying can be sound and invaluable advice for the living.

And that’s why it’s a really good thing you’re reading this article.

One of the key revelations from Bronnie’s study is that we often take our lives for granted because we are healthy.

Health affords us boundless freedom very few realise, until we no longer have it.

But while her dying patients were helpless in the face of their regrets, you and I still have time to do something about our regrets, before it’s too late.

Let’s now look at each of the 5 most common regrets Bronnie observed:

1)    I wish I pursued my dreams and aspirations, and not the life others expected of me

According to Bronnie, this was by far the most common regret of all.

When people realise their life is coming to an end, it becomes easier to look back and see all those dreams they had but didn’t have the courage to pursue.

In many cases, their failure to pursue those dreams were often due to fitting into the expectations of others – usually family, friends and society.

One of her dying patients, Grace, made Bronnie promise that she would pursue all her dreams and live her life to its fullest potential without ever considering what others would say.

According to Bronnie, Grace was in a long but unhappy marriage. And after her husband was put in a nursing home, she was diagnosed with a terminal illness. And Grace’s biggest regret was that she never was able to pursue all the dreams she put on hold.

I think the biggest lesson from this regret is, if you know what really makes you happy, do it!

It appears that our unfulfilled dreams and aspirations have a way of silently stalking us, and eventually haunt our memories in our dying days.

And if you’re afraid of what people will say about your choices, remember that their voices will not matter to you in your dying days.

2)   I wish I didn’t work so hard

This one makes me feel guilty.

According to Bronnie, this regret came from every male patient she nursed. And a few female patients too.

As breadwinners, their lives were taken over by work, making a living, and pursuing a career. While this role was important, these patients regretted that they allowed work to take over their lives causing them to spend less time with their loved ones.

Their regrets were usually about missing out on the lives of their children and the companionship of their spouse.

When asked what they would do differently if given a second chance, the response was quite surprising.

Most of them believed that by simplifying our lifestyle and making better choices, we may not need all that money we’re chasing. That way, we can create more space in our lives for happiness and spend more time with the people who mean the most to us.

3)   I wish I had the courage to express my feelings and speak my mind

This one just made me so much bolder. 🙂

According to Bronnie, many of her dying patients believed they suppressed their true feelings and didn’t speak their mind when they should have, because they wanted to keep peace with others.

Most of them chose not to confront difficult situations and people, even when it offended them. By suppressing their anger, they built up a lot of bitterness and resentment which ultimately affected their health.

Worse still, harbouring bitterness can cripple you emotionally and stand in the way of fulfilling your true potential.

To avoid this type of regret later in life, it’s important to understand that honesty and confrontation are a necessary part of healthy relationships.

There is a common misconception that confrontation is bad for relationships and can only create division.

Not all the time.

In reality, when confrontation is kind, honest and constructive, it helps to deepen mutual respect and understanding and can take the relationship to a healthier level.

By speaking our minds, we express our true feelings and reduce the risks of building up unhealthy stores of bitterness that ultimately hurt us.

4)   I wish I had stayed in touch with my friends

This one is a regret many of us struggle with.

Bronnie found that her patients missed their old friends and regretted they didn’t give those friendships the investment of time and effort they deserved.

Everyone misses their friends when they’re dying.

It appears that when health and youth have faded, and death is looming, people realise that some friendships hold more value than all their wealth and achievements.

According to Bronnie, it all comes down to love and relationships in the end. Nothing else mattered to her patients in the last few weeks of their lives but love and relationships.

We live in a busy world these days. And the pressures and demands of work, city life and trying to raise a family can take its toll on some golden relationships.

Knowing this now, what would you do differently?

5)   I wish I had let myself be happier

This is a very humbling one, really.

Many of her patients didn’t realise until the end of their lives that happiness is a choice.

They wished they had known that happiness isn’t something to be chased and acquired through wealth, social acceptance and the trappings of life.

In their deathbeds, these patients realized they could have chosen to be happy, regardless of their circumstances in life – rich or poor.

To me, this regret is the most touching.

Throughout our active lives, we often focus too much on acquiring the things we would like to have – wealth, status, power and achievement. We often (wrongly) believe that these things hold the keys to our happiness.

When asked what they could have done differently, here’s the key message those dying folks shared: Learn to relax and appreciate the good things in your life. That’s the only way to find real happiness.

Happiness is a choice.

Is it possible to live a life without regrets?

This is the big question I’ve been asking myself.

As no human being is perfect, and I doubt there’s anything like a “perfect life”, I expect all of us would have some regret(s) in our dying days.

But I think the key is to have as few regrets as possible.

And the best way to die with very few regrets is to live life as if we would die today.

After all, almost nobody knows exactly when they’ll die.

By living our lives as if the end is nigh, we would realise that we really don’t have all the time in the world. As a result, we would procrastinate less, and pursue our truest desires, dreams and aspirations.

Also, to live a life of few regrets, we have to focus on and accommodate ONLY those things and people that make us happy. Because if we try to conform to the expectations of others and hide our true feelings, the regrets could haunt us later in life.

If you’re reading this article and you’re alive and healthy, you still have a choice.

Remember, you only live once!

Don’t forget to share this article with people you care about. You may just save someone a ton of regrets.

I wish you an amazing life.

Complete Article HERE!

How to die well

Lack of faith is no impediment to a decent death – or to helping another through theirs

Stand by me: Shailene Woodley and Ansel Elgort as cancer patients who fall in love, in The Fault In Our Stars.

By Johannes Klabbers

In the secular age you don’t need special authorisation to console a dying person. Just learning what it means to be there for someone is enough.

Death literacy” is officially a thing. People go to death cafés; books about death are in demand… and around 55 million people worldwide do it every year. But how do you actually do dying well? And who can dying people turn to for support?

Although I know exceptional doctors and nurses who can and do talk with patients about their looming demise, it is something that many don’t feel qualified to do.

Traditionally, expertise in dying was thought to be the remit of religion. The Catholic church recently revived their medieval handbook for dying people, Ars Moriendi, now illustrated with drawings of happy families rather than demons, like the original, and handily available in the form of a website: artofdyingwell.org.

But what are the options for atheists or agnostics today? When it comes to thinking about what it means to be mortal, many people find themselves in a kind of secular vacuum. But living a life without religion doesn’t mean that you have to be alone at the end.

As a secular pastoral carer, I learned that consoling a seriously ill and dying person is something that almost anyone can do, whatever their faith – or lack thereof. You don’t need a special qualification, or a badge, or permission from an authority figure, supernatural or otherwise, just your humanity and determination – and for the suffering person to want someone to be there with them.

The first crucial step is turning up. Too often, our anxiety about saying or doing the “wrong thing” leads us to decide not to visit someone. Offering to be there for someone, even if they decline – and they might – is never wrong. Being there for someone means giving your attention to the person not to their illness, and concentrating on listening, not on worrying about what to say.

You will need to accept that the dying person may not want to discuss their sadness and fears – at least at first. They may want to talk about the football or the latest episode of Bake Off. Or they may just need someone to sit with them in silence.

Remember that it is not unreasonable to feel awkward. You might feel uneasy in the setting, or be distressed by their appearance. But your job is to accept your discomfort and think beyond it. You can show sadness, but do not burden them with your grief. You may need to be supported and comforted yourself afterwards.

While there might not be any formal qualifications in death literacy with which you can arm yourself, there are a number of wonderful, entirely secular, books by brilliant writers who are in the process of dying or supporting dying people, from Jenny Diski’s In Gratitude (to Tom Lubbock) and Marion Coutt’s memoirs, which together form an awe-inspiring document of courage, humility and humanity.

There is a moment which perfectly illustrates how to console a dying person in the Dutch author Connie Palmen’s moving memoir Logbook, when her husband, a leading Dutch politician, lies dying. In a moment of lucidity he sits upright and exclaims, “I am sorry for my sins!”

“I absolve you,” Connie tells him.

Ultimately, our humanity is all the authority we need to offer consolation to dying people.

Complete Article HERE!

Death With Dignity

Longtime lobbyist John Radcliffe, 74, terminally ill with stage-four cancer, is working to change Hawaii’s laws that prohibit access to life-ending medication when suffering becomes unbearable

By Susan Kang Sunderland

[P]utting one’s life on the line for a cause is nothing new to lobbyist John Radcliffe. The deft negotiator made a career of it. But now he literally is doing so to awaken our community to an issue.

If he and supporters are successful, Hawaii will be among seven states to legalize medical aid in dying.

Radcliffe, 74, who is terminally ill with stage-four cancer, has been in the news a lot lately to express his wish to have access to life-ending medication should his suffering become unbearable. But currently in Hawaii that is a crime.

Through legislative and legal action, Radcliffe hopes to empower individuals to make life-ending decisions that do not subject doctors to prosecution in order to assist patients in that process.

Radcliffe’s family is in full support of his wish, but unless things change, this will not be among the options available to him when he suffers prolonged, debilitating pain.

Words matter in discussing this sensitive issue. So Radcliffe is quick to set parameters on what he is — and isn’t — talking about.

John Radcliffe says if the legal system is a barrier to quality of life, you change the law

“Aid in dying is a medical practice to treat adults who are terminally ill with six months or less to live,” Radcliffe explains. “They must be mentally capable of making their own decision to request a prescription for life-ending medication from their physician, which would be self-administered.”

Aid in dying, he emphasizes, is not assisted suicide or euthanasia.

“To a terminally ill person, the term ‘assisted suicide’ is offensive and hurtful,” the Makiki resident says. “I want to live, but my condition is incurable. There is no hope for a better outcome.

“Suicide is secretive and often impulsive, without involvement of family, friends or health care professionals,” he adds.

Medical aid in dying also is known as death with dignity.

“The issue is really about dignity, pain and unnecessary suffering,” Radcliffe says. “I come from the position that you should do as much as you can as well as you can for other people for as long as you can.

“I am in a unique situation to do that,” asserts the government relations expert.

Radcliffe was diagnosed with incurable colon cancer in 2014 that has metastasized to his liver. He’s been hospitalized three times, been in the emergency room 15 times and has had 42 chemotherapy treatments.

He took his 43rd chemo treatment Wednesday, Jan. 18, while seated next to state Sen. Rosalind Baker at the opening of the state Legislature.

That’s a bit dramatic, we say about his unorthodox tactic of persuasion.

“Nah,” Radcliffe says with a laugh. “No one even noticed. That’s why I have to make a point of it. When you talk to legislators about cancer, it tends to be theoretical. Well, this isn’t theoretical to me. This is real.”

As a union organizer and lobbyist for four decades, including 13 years as executive director of the Hawaii State Teachers Association, Radcliffe knows that addressing social problems with lawmakers is not easy.

His credibility is at stake. “The legislators know me,” says the co-founder and president emeritus of Capitol Consultants of Hawaii. “They trust me. They know I won’t lie to them or give them bad information.

“But I can’t imagine that with 80 percent of voters being in support that they would be opposed,” Radcliffe suggests.

A poll conducted last November by Anthology Research shows 80 percent of Hawaii voters across all demographics believe a medical aid in dying option should be legal. Strong support (55 percent) outweighs strong opposition (8 percent) by an almost seven-to-one margin, while 12 percent oppose the option.

“This is about the ability to have a choice when you’re suffering,” Radcliffe states. “It’s comforting to some people to know they have a choice, as it is to me.

“I want to be in control of my life, as I’ve always been. It’s about quality of life. If the legal system is a barrier, ‘you change the law.’”

That’s the second strategy he and the advocacy organization Compassion & Choice Hawaii will mount after years of failing to get legislation passed.

Radcliffe, retired oncologist Dr. Chuck Miller, and Compassion & Choices Hawaii are plaintiffs in a lawsuit against the state of Hawaii asserting that the Hawaii Constitution and existing state law allow the practice of medical aid in dying.

“Mr. Radcliffe can’t wait and see whether the courts or the Legislature will ultimately solve this question, but our hope is that this option will be made available to him as soon as possible. By filing litigation now, we have put the process in motion on all fronts,” says Mary Steiner, Compassion & Choices Hawaii campaign manager.

Aid in dying currently is permitted legally in Oregon, Washington, Montana, Vermont, California and Colorado.

In Hawaii, a Governor’s Blue Ribbon panel on living and dying with dignity in 1998 recommended changing existing laws, rules and practices to give wider choices in end-of-life decisions, including physician-assisted death.

End-of-life options include declining treatment or avoiding unwanted medical treatment, palliative care (pain management) or VSED (voluntarily stopping eating and drinking).

Radcliffe’s is not the only story of a terminally ill person seeking end-of-life options. There are many stories of patients, families and friends who know the plight of long-suffering individuals.

There are heart-wrenching accounts of bewildered care-givers who experience the helplessness and difficulty of aiding agonized loved ones. They suffer in silence.

But proponents of legislation urge citizens to let their voices be heard, whether it’s by letters to legislators, testimonies to help educate the community, or joining forces to add representation to the cause.

“If this means anything to people, they must show up,” Radcliffe urges. “This is the year that this must happen.

“It’s too late for me. But it doesn’t have to be for others,” he implores.

Opponents cite spiritual, moral and modern medical advances to counter the need for more options. In fact, emotions run high when the dialogue is about death — the D word.

“Local people no like talk about dis kine stuff,” Radcliffe says.

Actually, all people don’t enjoy bringing up the subject. Talking about death is a social taboo. It’s just not done

in polite society. But with Hawaii’s aging population, it is an essential and timely topic for private and public discourse.

In Oregon, for instance, end-of-life care reportedly is improved since the law’s implementation in 1997. It is said to be thanks in large part to the dialogue the law encourages between people and their doctors.

Hospice use is high and referrals are up, as is other use of palliative care.

But what of the man to whom we address this living eulogy?

“I want to be remembered as a good, loyal friend and a decent human being,” he says.

“I hope this legislation passes without trouble,” he reflects, citing the move toward patient-directed care. “It would say something about us as a people. If we aren’t humane people, then who are we?”

As an inspired philanthropist once said, “There’s a lot of difference between human being and being human.”

Many will remember the contributions John Radcliffe has made to this community. He has spent his life fighting for causes. This will be his last and perhaps best fight.

As retired teacher Carol Sakamoto says in tribute, “Wish him well, and tell him that all the teachers will be praying for his success and thank him for his many years of service.”

That’s what living well and making a difference is all about.

Complete Article HERE!

How do you want to die? Write it down.

[M]ost Americans are unprepared for the worst to happen—an accident or an unexpected illness that leaves them brain dead, but still alive.  That’s what happened to Terri Schiavo, a young woman who became comatose after suffering a heart attack in 1990.  

Schiavo was kept alive by a feeding tube for fifteen years.  During that time, her husband tried to withdraw the feeding tube, but was adamantly opposed by Schiavo’s parents, Congress, and President George W. Bush.  After a highly publicized legal battle, the feeding tube was finally removed and Schiavo died two weeks later.  This protracted battle might have been avoided, if Terri Schiavo had completed a document known as an advance directive.  

Post-Terri Schiavo

81-year old Leah Brueggeman wants her intentions made clear, in the event she is unable to express her wishes for medical treatment.  She and her husband live in La Crosse, Wisconsin and they completed their six-page advance directives in 2009 with the help of an attorney.  “We don’t want to be put on feeding tubes indefinitely,” says Leah. “If there’s no chance of recovery—just let us go!”

The advance directive is a legal document that has two parts.  One specifies the kind of medical care a patient wants if he is no longer competent.  For example, CPR if his heart stops, feeding tubes if he can no longer eat on his own, IV fluids for hydration.  Or he can refuse any or all of these interventions.  The patient also designates someone trusted who can make medical decisions on his behalf if he is unable to.

The Schiavo case brought more public attention to the importance of having an advance directive.  But that interest quickly receded.  Today, only a third of all Americans have completed an advance directive. Dr. Ruma Kumar, a palliative care specialist and regional medical director with Kaiser Permanente of Northern California, says that many patients are too afraid to plan for their future health care and their doctors are often reluctant to bring up planning.  According to Kumar, doctors don’t have the time to engage their patients in extended end-of-life conversations.  “Or if you bring up planning, you might make the patient nervous that you’re giving up hope in their treatment plan,” she says.  

Limits of advance directives

But even if an advance directive is completed, a patient’s stated wishes may not always be carried out.  The document can get overlooked, misplaced, or ignored by medical staff, as Katy Butler found out.  “Hospitals are a world of their own,” says Butler. “It’s like a foreign subculture.  And once you enter into that system, it can be very, very difficult to get your wishes put into practice.”

Butler is a Bay Area journalist who wrote the best-selling memoir “Knocking on Heaven’s Door:  The Path to a Better Way of Death.”  In her book, Butler described her own difficult experiences, trying to get her father’s advance directive enforced.  She recalls going up against a wall of resistance when his physician refused her request to withdraw treatment for her dying father.  

Butler’s father was 79 when he suffered a major stroke in 2002, which caused brain damage and dementia. He had a weak heart and Butler says he probably would have died of natural causes within two years following the stroke.  But his pacemaker kept him alive for the next six years.  In her memoir, Butler says that the extra years of life caused him great misery.  “The tipping point had come,” she writes. “Death would have been a blessing and living was a curse.”

As her father’s designated medical agent, Butler went to his cardiologist and requested that the pacemaker be turned off.  “The doctor not only refused to cooperate—he really treated us as if we were some kind of moral monster,” Butler says. “Technically according to the law, you have the right to refuse any form of medical treatment and you have the right to request the withdrawal of any form of medical treatment.  But you’ve got an advanced device like a pacemaker—you don’t know how to turn it off.  You don’t know where to go to get someone to help you turn it off if your cardiologist is saying no.”

La Crosse, Wisconsin—the best place to die in America

One place Katy Butler might have gone for help was La Crosse, a small city on the Mississippi River in Wisconsin.  La Crosse is known for its steamboats, Wisconsin cheese, and its excellent end-of-life care.  La Crosse is the home of the Gundersen health system, ranked in the top one percent of hospitals nationwide. An astounding 96 percent of all La Crosse residents who died last year had completed advance directives. That figure far exceeds the number of people who complete advance directives in the Bay Area and the rest of the country.  

Dr. Bud Hammes, Gundersen medical ethicist

Dr. Bud Hammes, a medical ethicist at Gundersen, led the effort to improve end-of-life care in La Crosse. The key to success, says Hammes, was creating a supportive culture of person-centered care that honors a patient’s goals and values.  “It isn’t just about training a few people to have these conversations with patients,” Hammes says. “It’s actually about changing the culture of the health care system and ultimately of the community.”

To change the culture at Gundersen, Hammes convinced hospital administrators in the late 1980’s that end-of-life care needed to be given higher priority.  An electronic medical record system was created to document patient preferences.  That way, advance directives are easily accessible and can’t get lost.

End-of-life conversations and advance directives are now part of the hospital’s routine practice.  Michael Sigmund is a long-time La Crosse resident and patient at Gundersen.  He explains,“It’s the nurse who asks the question when you first walk in the door.  ‘How are you doing?  You have any pains today?  Do you have an advance directive?’”

Michael Sigmund (far left) at La Crosse Coffee Shop

Others come to Gundersen to complete their advance directives because of peer pressure from friends and family.  Karen (who did not want her last name used) sought out the assistance of Gundersen facilitator Janet Olmstead for help with her advance directive.  Karen put off this visit for many years, but finally overcame her hesitancy after speaking with a friend.  “I don’t want somebody else stuck with making decisions,” she says. “It’s a burden for them to make decisions that they don’t know what I want.  So I just thought, ‘now is the time.’”

Karen and Janet Oldstead, a Gundersen advance care planning facilitator

Karen says she doesn’t want heroic measures or life-prolonging treatments if she’s no longer functional. Like Karen, many of Gundersen’s patients want medical treatments stopped if there’s little or no hope of recovery.  Honoring patient preferences has resulted in fewer tests and expensive procedures.  “We are very successful in outcomes in decreasing the costs at the end of life in comparison to lots of other systems,” says Gundersen CEO Dr. Scott Rathgaber, “I can tell you that’s millions of dollars that are left on the table because of our commitment to the patients.”

The Gundersen program was so successful that Hammes took it city-wide.  In the early 1990’s, Gundersen partnered with the other three local hospitals and formed a coalition called “Respecting Choices”.  It brought churches, social service agencies, and nursing homes together and trained their staff to do community education and outreach.  This concerted 25-year campaign has done much to raise public awareness around end-of-life planning and advance directives.  

The La Crosse model comes to the Bay Area

Inspired by La Crosse’s success, Kaiser Permanente worked with Gundersen and started its own Life Care Planning program in 2012. Among its goals is to increase the number of patients completing advance directives.  Over 600 physicians, nurses, and social workers have now been trained as facilitators.  Kaiser palliative care specialist Ruma Kumar says much of what Kaiser did was modeled after the Gundersen program.  “We’re hoping to do the same thing over the next eight to 10 years,” she says. “To get greater than 90 percent of our patients with planning done.”

But replicating the Gundersen model throughout the entire Bay Area presents huge challenges.  Bringing together all the hospitals and the hundreds of churches, senior facilities, and social service agencies would be extremely difficult and expensive.  In addition, the Bay Area has a much larger, diverse population with multiple languages and cultures.  Without language-proficient facilitators, outreach to all sectors of the Bay Area would be nearly impossible.  

Educational outreach efforts largely depend on volunteers organizations like the East Bay Conversation Project, a community-wide coalition working to help people plan their preferences for care at the end of life.  At a recent gathering in Berkeley, Alison Rodman and two other volunteers talked to a group of seniors on how to complete an advance directive.  She tells them that forms are available on-line.  “It’s a pretty simple document that’s legal and you don’t have to go through great expense by using a lawyer or having it notarized,” Rodman explains.

Don’t wait until it’s too late

La Crosse resident Leah Brueggeman is glad her family didn’t wait.  “And of course, we don’t like to think of death and dying but—it happens,” she says.  Several years ago, Leah’s husband Jim made the decision to stop medical treatment for his ailing mother.  But following her death, Jim had second thoughts.  “I came home and my husband—he was just nearly sobbing.  He was just distraught,” Leah recalls, “He said ‘I killed my mother.’  He said ‘We stopped her medication.’  I said ‘That’s what she wanted.'”

Leah Brueggeman

Unbeknownst to Jim, his mother had filled out an advance directive.  Leah went to his mother’s assisted living facility and found a copy of it.  “We got it out.  Her wishes are right here:  no medication blah blah blah,” Leah says. “I took that home and said ‘Honey, take a look at this.  This is what your mother wanted. You’re not killing her.'”

Jim stopped agonizing over his mother’s death, now that he no longer had to guess at what she wanted. Thanks to her advance directive, Jim and Leah were able to avoid the guilt and conflict that had torn apart the family of Terry Schiavo over 20 years ago.  

Complete Article HERE!

Legalizing Aid In Dying Doesn’t Mean Patients Have Access To It


Dr. Lonny Shavelson heads Bay Area End of Life Options, a Berkeley, Calif., medical practice that offers advice and services to patients seeking aid in dying under the state law enacted last June.

 

By JoNel Aleccia

[I]n the seven months since California’s aid-in-dying law took effect, Dr. Lonny Shavelson has helped nearly two dozen terminally ill people end their lives with lethal drugs — but only, he says, because too few others would.

Shavelson, director of a Berkeley, Calif., consulting clinic, said he has heard from more than 200 patients, including dozens who were stunned to learn that local health care providers have refused to participate in the state’s End of Life Options Act.

“Those are the ones who could find me,” says Shavelson, who heads Bay Area End of Life Options and is a longtime advocate of assisted suicide. “Lack of access is much more profound than anyone is talking about.”

Across California, and in the five other states where medical aid-in-dying is now allowed, access is not guaranteed, advocates say. Hospitals, health systems and individual doctors are not obligated to prescribe or dispense drugs to induce death, and many choose not to.

Most of the resistance comes from faith-based systems. The Catholic Church has long opposed aid-in-dying laws as a violation of church directives for ethical care. But some secular hospitals and other providers also have declined.

In Colorado, where the nation’s latest aid-in-dying law took effect in December, health systems covering nearly third of hospitals in the state, plus scores of clinics, are refusing to participate, according to a recent STAT report.

Even in Oregon, which enacted the first Death with Dignity law in 1997, parts of the state have no providers within 100 miles willing or able to dispense the lethal drugs, say officials with Compassion & Choices, a nonprofit group that backs aid-in-dying laws.

“That’s why we still have active access campaigns in Oregon, even after 20 years,” says Matt Whitaker, the group’s state director for California and Oregon. “It becomes a challenge that causes us to have to remain extremely vigilant.”

In Washington state, where the practice was legalized in 2009, a Seattle hospice patient with advanced brain cancer was denied access to willing providers, so he shot himself in the bathtub, according to a 2014 complaint filed with the state health department.

“Refusing to provide information or appropriate referrals directly led to the unnecessarily violent death of this patient,” said the complaint filed by an anonymous hospice nurse. “I strongly believe this constitutes patient abandonment.”

Lack of access was also an issue for Annette Schiller, 94, of Palm Desert, Calif., who was diagnosed with terminal thyroid and breast cancer and wanted lethal drugs.

“Almost all of her days were bad days,” recalled Linda Fitzgerald, Schiller’s daughter. “She said, ‘I want to do it.’ She was determined.”

Schiller’s hospice turned down her request, and she couldn’t find a local referral, forcing Linda Fitzgerald to scramble to fulfill her mother’s last wish.

“I thought it was going to be very simple and they would help us,” says Linda Fitzgerald. “Everything came up empty down here.”


Annette Schiller of Palm Desert, Calif., who was 94 and diagnosed with terminal thyroid and breast cancer, had trouble finding doctors to help her end her life under California’s new aid-in-dying law.

Opponents of aid in dying cite providers’ reluctance as evidence that the laws are flawed and the practice is repugnant to a profession trained to heal.

“People consider it a breaking of professional integrity,” says Dr. David Stevens, chief executive of Christian Medical & Dental Associations, which has worked to stop or overturn aid-in-dying laws in several states.

But those decisions can effectively isolate people in entire regions from a legal procedure approved by voters, advocates said.

In California’s Coachella Valley, where Annette Schiller lived, the three largest hospitals — Eisenhower Medical Center, Desert Regional Medical Center and John F. Kennedy Memorial Hospital — all opted out of the new state law. Affiliated doctors can’t use hospital premises, resources or systems in connection with aid in dying, hospital officials said.

“Eisenhower’s mission recognizes that death is a natural stage of the life journey and Eisenhower will not intentionally hasten it,” Dr. Alan Williamson, vice president of medical affairs of the non-profit hospital, said in a statement.

Doctors may provide information, refer patients to other sources or prescribe lethal drugs privately, Williamson said.

“All we have done is say it can’t be done in our facility,” he added.

In practice, however, that decision has had a chilling effect, says Dr. Howard Cohen, a Palm Springs hospice doctor whose firm also prohibits him from writing aid-in-dying prescriptions or serving as an attending physician.

“They may be free to write for it, but most of them work a full day. When and how are they going to write for it?” he said. “I don’t know of anyone here who is participating.”

Patients eligible for aid-in-dying laws include terminally ill adults with six months or less to live, who are mentally competent and can administer and ingest lethal medications themselves. Two doctors must verify that they meet the qualifications.

Many doctors in California remain reluctant to participate because of misunderstandings about what the law requires, says Dr. Jay W. Lee, past president of the California Academy of Family Physicians.

“I believe that there is still a strong taboo against talking about death openly in the medical community. It feels like a threat to what we are trained to do: preserve and extend life,” Lee says, adding that doctors have a moral obligation to address end-of-life concerns.

There’s no single list of doctors willing to prescribe life-ending drugs, though Compassion & Choices does offer a search tool to find participating health systems.

“They don’t want to be known as the ‘death docs,’ ” says Shavelson, who has supervised 22 deaths and accepted 18 other people who were eligible to use the law but died before they could, most within a required 15-day waiting period.

Officials with Compassion & Choices said past experience indicates that more providers will sign on as they become more familiar with the laws and their requirements.

At least one California provider, Huntington Hospital in Pasadena, originally said it wouldn’t participate in the law, but later changed its position.

Other health systems have opted to not only participate, but also to help patients navigate the rules. Kaiser Permanente, which operates in California and Colorado, has assisted several patients, including Annette Schiller, who switched her supplemental insurance to Kaiser to receive the care.

Within weeks, Schiller was examined by two doctors who confirmed that she was terminally ill and mentally competent. She received a prescription for the lethal drugs. On Aug. 17, she slowly ate a half-cup of applesauce mixed with Seconal, a powerful sedative.

“Within 20 seconds, she fell asleep,” her daughter recalled. “Within a really short time, she stopped breathing. It was amazingly peaceful.”

Complete Article HERE!