How to Live When You’re Dying

Embrace the idea of death for a better life.

By Wesley Baines

Death.

It’s a concept that few wish to dwell on, but one that will eventually become a reality for each of us. For some of us, it comes rushing up sooner than we’d like, and suddenly the hands of the clock are moved up to five minutes till midnight. For others, the hands move at their normal pace, but our minds linger on what those final moments will hold.

The truth is that we are all dying. Every last one of us. But by learning to accept death, by allowing the ticking clock to drive us to greater heights rather than to deeper despair, we can truly live. And in choosing to live in the face of death, we not only improve the time we have left, but also set an example for others so that they might do the same.

Whether you’ve recently found your own clock unexpectedly moved forward or if you simply find your eventual end more discomforting than you’d like, there are lessons to learn here that will make the remainder of your life not mere a series of days, but beautifully alive.

Accept and Acknowledge

As a culture, we don’t like to talk about death—it’s one of our staunchest taboos. But the problem with this is that we don’t deal with it. We pretend it doesn’t exist, that the clock isn’t ticking at all.

And so because we don’t deal with death in a meaningful way, we become divided into two camps—those who are paralyzed by the fear of death, and those who feel it will never happen to them. Both views are mistakes.

Those who are terrified of death are limited by it. They are confined to what is safe, and live lives of mental agony. Those who feel invincible, on the other hand, lack the motivation that only an awareness of our limited time can bring.

But when we embrace death, when we acknowledge it by openly talking about it, and when we can accept that it is inevitable, we can make use of it. It can be our friend.

When Steve Jobs gave his 2005 Stanford commencement speech, he told the students: “No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent.”

He went on, saying “Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.”

Dealing with your own impermanence is painful. It means making yourself vulnerable and open. It means intentionally processing things you’d rather tuck beneath the rug. But when you do, when you accept and acknowledge, you can move past the fear of, or indifference toward, death, and in doing so, you may just find life for the first time.

Be Kind to Yourself

Learning how to live in the face of death means learning to love yourself. It means you learning to be kind to you.

This means several things. First, it means, as Jobs said, avoiding the idea that you have something to lose—forgive yourself for any perceived failures. The burdens you place upon yourself, the weights you pile onto your shoulders—take them off. They’re not a big deal.

This doesn’t mean shirking your responsibilities toward those you love and care about. It doesn’t mean that you don’t work to make the world a better place. This simply means that you don’t carry these things as a weight. You don’t constantly berate yourself for not attending to them well enough.

You do your best and move on.

If you have a habit of being unkind to yourself, tapping into the awareness of death is an empowering tool that can help you forgive yourself. And once you forgive yourself and let go of your fears of imperfection and underachievement, you’ll have so much more room in your life for the things that truly matter.

Perspective and Priorities

Considering the reality of death brings perspective. It helps us see what is truly important.

What matters to you? Is it your family? Is it your web of relationships? Are you committed to a cause? Are you bent on creating something beautiful with your life? Are you spiritual or religious? What deserves your time?

Likewise, what are you doing that is wasting your time—for many, the thought of death brings this to mind first. Are you working overly long hours or spending time with people who don’t truly value you? Are you obsessed with the future at the cost of living in the moment?

Once you’ve acknowledged death as a part of life, you can use this to drive you trim the fat and focus on what’s really important to you. It forces you to examine your life, and like Socrates once suggested, the examined life is the one worth living.

In an interview with the Guardian, Holly Webber, a British woman diagnosed with terminal cancer, has this to say about how her perspective has changed since her diagnosis.

“Sometimes I feel like I’m on another planet looking in on this one. I can’t relate to people stressing about work or getting the Tube. People are so wound up, but it’s such a waste of time and energy. Chill out! I hope that by reading this, someone out there will take a second to think, ‘I’m glad that’s not me. Maybe I should worry less about the things that don’t really matter.’”

Allow death to grant you perspective on your priorities, and you’ll gain the life you truly want.

A New Life From Death

You’ve heard the old cliché, “Carpe diem,” which is Latin for “Seize the day”. This phrase is the essence of what death has to teach us. Be present. Live in the moment. Love the people in your life with all your heart and mind and soul.

Because in a hundred years, those business reports will be dust. Your money will be gone. Your fears and burdens won’t matter.

And that should make you feel free, not fearful.

So be open to the idea of death. Talk about it without fear or denial. Use it to shed your woes and gain a better perspective on your priorities.

Above all, use death to live. It’s one of the best things you can do for yourself, as well as for those who love you.

Complete Article HERE!

Planning for death: Still not easy to talk about ‘taboo’ issue

Almost 10,000 have completed end-of-life arrangements through Advance Care Planning

Madam Amiron Jee

By Foo Jie Ying

[A] former nurse, she has seen her fair share of patients dragging out their final days on life support.

She is also a cancer patient. When she felt her body “going downhill” in late 2014, the Singapore General Hospital (SGH) volunteer, who had heard of Advance Care Planning (ACP) decided to find out more about about it.

She later completed her ACP with the SGH social service department.

The mother of three told The New Paper: “When I fell quite ill then, I was thinking, good thing I had this thing done. I informed my children (about my ACP).”

ACP is a series of conversations about one’s wish for care and treatment in the event of difficult medical situations, when one becomes too ill and is unable to make decisions for oneself.

It can be conducted informally between individuals and their loved ones at home using a workbook by the Agency for Integrated Care (AIC), or formally with trained facilitators present.

Close to 10,000 people have completed formal ACPs to date, since AIC rolled it out in 2011.

The Ministry of Health will reach out to 25,000 Singaporeans over the next four years, said Minister of State Chee Hong Tatlast month.

ACP will also be expanded to different care settings, like specialist outpatient clinics and in primary care, he said.

There is reluctance to talk about death because most people think a medical crisis will not happen to them, said Mr Mark Lin, who started the Good Death project to encourage early end-of-life planning.

The deputy director of Special Projects (Eldercare) at charity Montfort Care told TNP: “The idea of talking about planning for situations if anything happens to yourself can be quite a taboo.”

Madam Jee’s husband is one such example.

The couple had approached SGH’s social service department together, but unlike her, he refused to do an ACP because it is “pantang” (Malay for taboo).

But for Madam Jee, who battled breast cancer in 1998 and lung cancer in 2015, and was diagnosed with Stage 4 brain cancer last year, conversations about death are a matter of pragmatism.

“For me, I’m doing this partly for the sake of my children. I’m a cancer patient. For cancer patients in the terminal stage, it’s very hard to recover because the cancer cells are eating the body up.

“I don’t want my children to feel guilty for suggesting to let me go in peace instead of putting me on artificial nutrition to survive. It may sometimes stay with them, with them thinking ‘I shouldn’t have done that’,” she told TNP.

With her funeral arrangements made, the Muslim also does not have to worry about her three US-based children being unable to rush back in time for her burial, which must be done as soon as possible..

While it is still not easy to talk about end-of-life issues, AIC deputy chief executive Wong Kirk Chuan told TNP he hopes to overcome this by working with partners like the Singapore Hospice Council to raise awareness on these issues.

Instead of waiting for a medical crisis, Dr Wong encouraged early ACP conversations, which offer peace of mind.

Mr Lin, whose youngest clients include a 38-year-old couple, agreed. He said: “The whole point of the ACP is not what you put on the document, although it is a formal record of your wishes. It’s about the process of talking about such things.

“ACP is like a health booklet that follows you as you age. It’s something you have to keep updating.”

Complete Article HERE!

Sharing One’s End of Life Choices – via a Mobile Device

By

[P]atients can now use their smartphones to share their wishes for end of life care — whether or not they want to be intubated or have CPR, for example — with ambulance crews, loved ones, emergency-room doctors and hospitals.

No more fumbling for a piece of paper, signed by the doctor, to show health-care providers when a terminally ill loved one is rushed to the hospital. Patients in New Jersey can have their wishes become part of their electronic medical record and shared on mobile devices.

The online version of the “Practitioner Orders for Life-Sustaining Treatment” was launched Friday, almost five years after New Jersey authorized the use of a paper form for frail and severely ill patients. The online version will be part of a registry maintained by the New Jersey Hospital Association, with strict safeguards for patient privacy.

“We’re moving beyond having a green paper hanging on the refrigerator,” said Health Commissioner Cathleen D. Bennett, speaking of the paper version of the POLST forms. When patients articulate their preferences, it helps them to live on their own terms at the end of life, she said.

They can also express their goals for care, ranging from a full attack on their disease to palliative or comfort care. The form is signed by both the patient and the doctor or advanced-practice nurse, and is considered a medical order. Emergency personnel can follow it whenever the patient can’t speak for himself.

Joseph Carr, NJ Hospital Association Chief Information Officer, demonstrates how the emPOLST can be accessed electronically and how it can help inform care.

“Through this tool, more health-care providers will have immediate access to critical information they need to treat the patient according to the patient’s health-care preference,” Bennett said. “Patients with smart phones also will be able to share their electronic POLST form with a new physician, specialist or emergency-room doctor.”

In New Jersey, about 11,000 patients a year created POLST forms at each of the hospitals that participated in a study of it, said Joseph A. Carr, chief information officer for the New Jersey Hospital Association, who demonstrated the electronic version.

At a ceremony at the Villa Marie Claire Hospice in Saddle River, Bennett and Betsy Ryan, president of the association, signed an agreement for the association to become the online repository for the POLST forms. The villa, a former convent, is an inpatient hospice for 20 patients that is part of Holy Name Medical Center.

Talking about the end-of-life is one of the most important conversations a family can have, said Michael Maron, president of the medical center. The hospice’s decade of work has taught him that patients feel comforted and empowered when they are able to communicate their choices clearly and effectively, and they are understood by caregivers and loved ones.

The POLST form is available from the Department of Health or the New Jersey Hospital Association. For more information, also see National POLST Paradigm.

Complete Article HERE!

Five questions with end-of-life doctor

 
By Carmela Fragomeni

[A]merican palliative care doctor and end-of-life activist Bruce (B.J.) Miller was in Hamilton Thursday to talk about Life Before Death.

The free event was part of Hamilton Health Sciences’ new twice-a-year speakers’ series called GreatBigIdeas.

Miller has made it his life’s mission to improve end-of-life experiences for people and their families after an accident in his early 20s left him close to death and a triple amputee.

The Spectator spoke with Miller before his presentation.

Q — Why do you say you have a formal relationship with death?

A — I’ve come close enough to acknowledge it and by acknowledging death, it begins a relationship. You begin to relate to “nothing lasts forever”…I can comment on what it’s like to lose because of my own injuries…We can’t control everything — I chose to keep that in mind as I traverse the day. It helps me live more fully and appreciate what I have while I still have it…Loss is hard. It also proves how precious life is in the first place, which encourages us to enjoy it while we have it.

Q — Why does the health system not serve the dying very well?

A — By choosing to wage war on disease, we end up feeling like losers when we’re not curable and when we die. It’s a shaming…The system does incredible work on cures. But it abandons the people who are no longer fixable. This adds an extra layer of sadness that is unnecessary.

A — How can we make dying a better experience for all of us?

Acknowledging it and pulling it out of the closet …normalizing it, I think that would help…Stop dividing medical issues from social issues…I worry about all the wisdom that languishes in nursing homes. I worry that no one listens.

Q — You say you don’t have to be dying to benefit from palliative care. What do you mean?

A — Everyone conflates palliative care with end of life…Palliative care is about timing in the face of illness and quality of life. It includes end of life but is not focused on it. Hospice is devoted to the end…Palliative care is not running away from death but not focusing on it either.

Q — How can someone live well when facing imminent death?

Well, that process begins before (facing death). If you crafted a world view that includes death, you won’t be surprised when your time comes. That way your persona can remain intact and you can stay whole to the end…even as your body crumbles. If you see death as an unnecessary force, you’ll find yourself at odds with yourself.

Complete Article HERE!

We’re dying more at home. That’s good

[F]or many years now, pollsters have asked Americans where they would rather die, in home or in a hospital.

Once the initial shock of the question wears off (“Who said I was going to die in the first place? How dare you!”), most of us answer that we would prefer to die at home, in familiar settings, surrounded by loved ones. It makes sense.

Then, of course, most Americans go off and die in the hospital, in large part because they haven’t made their end-of-life wishes known to people who might have to make those decisions. (Or, in the alternative, because they haven’t thought that much about their end-of-life decisions in the first place.)

Oregon is an exception. And that’s a good thing.

recent article in The New England Journal of Medicine noted that nearly two-thirds of Oregonians who died in 2013 did so at home, as opposed to 39.6 percent of Americans. (The article relied on statistics from Medicare and defined “home” as wherever the person was living at the time of death.)

The article, by Dr. Susan W. Tolle, head of the Center for Ethics at Oregon Health & Science University, and Dr. Joan M. Teno of the University of Washington, had other good news for Oregon residents who might die someday:

  • The rate of intensive care unit use in the last 30 days of life in Oregon was 18.2 percent, as compared with 23 percent in Washington state and 28.5 percent in the rest of the United States.
  • Patients who were hospitalized in the last month of life were more likely to be discharged to their homes in Oregon (73.5 percent) than in Washington (63.5 percent) or in the rest of the United States (54.2 percent).

These numbers likely will not surprise anyone who’s followed Oregon’s efforts to lead the way in the tricky issue of end-of-life care. In their article, Tolle and Teno argue that one big step forward came in 1995, when Oregon created a POLST program.

POLST is an acronym for Physicans Orders for Life-Sustaining Treatment; the program essentially allows patients to document their preferences regarding the use of life-sustaining treatment. Ideally, medical providers have access to a patient’s POLST documents and abide by their instructions.

But just having a POLST program in place is not enough, the article notes: After all, Washington state has a similar program, but it trails Oregon in some of the metrics that Tolle and Teno were tracking.

The difference between the two states? At the risk of oversimplifying, a lot of it comes down to execution and follow-through.

In the decades since Oregon adopted the POLST program, the state has developed educational materials about it, organized conferences to spread the word, researched the issue and (perhaps most importantly) maintained a statewide registry of POLST participants. That electronic registry allows medical providers throughout the state to access it to check on a patient’s wishes at the end of life; that’s important because those patients may not always be able to speak for themselves.

Washington had a registry in place, but abandoned it because it wasn’t widely used.

Oregon’s POLST system isn’t perfect: For example, Tolle and Teno note that one-click access to the POLST form from a patient’s electronic medical records is not yet available in most hospitals. We need to keep measuring our progress and improving our systems.

Perhaps the best part of filling out the POLST forms is that it provides a starting point for conversations that are easy to put off. No one likes talking about death. But talking about it now might help ensure that we can die on our own terms.

Complete Article HERE!

It’s not death that he’s afraid of but dying

Noel Conway, who has motor neurone disease, and his wife Carol want to change the law on assisted dying

By

[T]he daffodils are in full bloom outside the cozy Shropshire cottage where Noel Conway prepares for his day in court, spring sunshine streaming through the window.

Typing has become too difficult for the 67-year-old. He can just about manage with a specially-adapted mouse, but has invested in the eye-gaze technology made famous by Stephen Hawking. He is finding it hard going. “I’m so slow. I don’t know how he ever wrote a book using it. But I am preparing for what I know lies ahead,” he says.

This highly articulate, retired adult education lecturer knows it is only a matter of time before he loses his powers of speech. Like Professor Hawking, Mr Conway has motor neurone disease. Unlike the physicist, he won’t live with the illness for years to come. This will probably be his last spring.

It is not death that alarms him but the process of dying. The suffering in the last months and weeks of life for those with MND is notorious. Bit by bit, neurons stop communicating with one another, resulting in difficulty moving, speaking, swallowing and eventually breathing. Mr Conway wants to have the right to say when enough is enough and die in some degree of comfort.

He cannot take his own life — he has not got the strength, and under the current law no one can help him die without risking prosecution and imprisonment. Which is why tomorrow Mr Conway and his wife Carol will take a judicial review to the High Court. Despite his poor health, he will be there in person.

Diagnosed in November 2014, his illness has progressed rapidly, particularly in the past few months. Having lost the power and feeling in his arms in the first stages of the illness, in November the former mountaineer, skier and cyclist caught an ordinary winter bug. “That finished off what strength I had left in my legs,” he said. He now relies on a hoist and uses a power wheelchair.

He can no longer clean his teeth or scratch his head. He gets stuck on his back in bed at night and has to call out for his wife to help him. He wears a ventilator much of the time.

On the plus side, he is still able to talk and does so with intelligence and passion. And he can still eat and drink with help, and the use of a one-way valve straw. “I draw the line at wine, though. I’m not drinking that out of a tumbler and straw.” He refused to have a tube fitted into his stomach for feeding. “The day I cannot eat and drink . . . well I don’t want to be here anymore.”

Noel Conway in 2008. He thinks it is wrong that the wealthy can afford to use Dignitas while others must continue to suffer

However, it is the thought of not being able to move, an inevitability, being trapped in a totally paralysed body, that he finds most harrowing. “I know that when I’m absolutely rigid and immobile, can’t speak or breathe, I want to be able to say right, it’s time to go,” he says. “I do not want to be trapped in a tiny cell inside a pyramid with the sides closing in on me.”

That fear prompted Mr Conway to join Dignitas, the Swiss clinic which offers medically-assisted dying to the ill and disabled. More than 40 Britons end their lives there each year and no one has ever been prosecuted for helping a loved one make the journey there. It is, in effect, a legal form of assisted suicide for the wealthy.

“It was a relief to join. I felt I needed to take control,” he said.

However, he feels there is something fundamentally wrong if the wealthy have an option that no one else has. His entire life he has tried to fight for those who have had no voice. He was a councillor in Blackburn in his early 20s and during his career championed the cause of those who missed out on education first time round to have another chance.

“Only a small number of people can afford Dignitas,” he says. “The fees are about £7,500 and you have to get there on top of that. So it is prohibitively expensive for many. It is inequitable.” It is this passion for fairness that has led him to take his case to court.

Supported by the campaign group Dignity in Dying and having raised £30,000 through crowdfunding, his legal team will ask the court to declare that the blanket ban on assisted dying under the Suicide Act 1961 is contrary to his human rights. They will argue that as a terminally ill, mentally competent adult, his right to a private life includes the right to make decisions on the end of his life.

He has a good case.

The most recent assisted-dying case was taken by Tony Nicklinson, who suffered locked-in syndrome. Although the Supreme Court finally rejected his case, judges were sympathetic and urged MPs to consider changing the law. Mr Conway will argue that they have not done this in any serious way despite polls suggesting overwhelming public support for change. MPs held a brief Friday afternoon debate on a private members’ bill on the issue in September 2015, then voted it down.

“I must say, I am appalled at the way a considerable number of MPs did not even engage with the issue, which is a very serious one for our time,” Mr Conway says.

Complete Article HERE!

I’m glad my friend was able to make his own end-of-life decision

Cave of Coffins at Beit Shearim National Park in Israel is believed to be the final resting place of Judah Ha-Nasi, a talmudic sage whose maid assisted him in dying.

[A] close friend passed away recently — no doubt among the first people to take advantage of California’s End of Life Option Act. Signed into law in 2015 and in effect as of June 9, 2016, the law gives terminally ill adults who have only six months to live the ability to request and obtain life-ending medication.

My friend had a virulent form of prostate cancer. He lived with it for a few years, but when the tumors began to invade almost every part of his body, he entered hospice and requested the drugs. He wasn’t sure he would take them, but when the pain kept getting worse and it became obvious that the end was near, he made his decision. He died peacefully with his family at his side.

Along with California, only Oregon, Washington, Vermont, Montana, Colorado and Washington, D.C., support medical aid in dying. Now, with the recent tide of conservatism, opponents of medical aid in dying are moving quickly to attack the option.

The law was challenged in Riverside in August, but a judge denied the request for an injunction filed by a group of anti-choice physicians. The Montana House of Representatives was considering a bill that would have allowed the state to execute doctors for prescribing end-of-life medication. The bill was narrowly defeated on March 1. The nominee to the Supreme Court, Judge Neil Gorsuch, wrote a book on how to defeat death-with-dignity bills, suggesting the option violates the Constitution.

I have always been a strong advocate of death with dignity. I first became involved in this issue several years ago, when my mother found out she had ALS, a devastating neurological disease. She was 77, a refugee from Hitler’s Germany, and knew what was in store. She asked me to help her.

I spoke to her doctor, who said he might be able to “put her under” if her distress became unbearable. We left it at that, until hospice became involved. When I told them about the agreement, they said they could not support it and would now monitor the amount of morphine in the house.

At a loss, I did research and found an organization called Compassion & Choices. They came to visit my mother and me, and told us what she could legally do to take control of her death in New York. She would have to acquire the appropriate life-ending medication, and take it while she was still functional. Like most patients in her situation, she was relieved to know what she could do, but ended up dying on her own.

All religions take a stand on this issue. There is no question that Jewish law and tradition reject suicide, prohibit murder and accept pain and suffering as a part of life. The tradition is less clear when it comes to a person who is already dying of a terminal illness.

The Talmud tells the story of the death of a great sage, Rabbi Judah Ha-Nasi. The rabbi is suffering greatly but his students are praying with fervor in the courtyard to keep him alive. Out of compassion for his suffering, his maidservant drops a jar from the rooftop, stunning the students into silence, at which point the rabbi dies.

This story has been used to justify the removal of life support, validating the patient’s right to a death with dignity, without pain and suffering. Judaism also usually considers palliative care an appropriate measure if someone is suffering at the end of life. But most Jewish traditions end there.

If we allow caregivers to remove life support, and to provide palliative care, why can’t we give the terminally ill the tools for a peaceful death? The states that support the legislation have very strict safeguards in place, and patients must take the life-ending medications themselves, after they have been prescribed by a physician for that purpose.

My friend found great comfort knowing he had the life-ending medication, even if he wasn’t sure he would take it. He told me it freed him from anxiety, so he could spend his last days focusing on what meant most to him — being with his family and his friends.

Complete Article HERE!