How Does a Buddhist Monk Face Death?

If we learn to celebrate life for its ephemeral beauty, its coming and going, we can make peace with its end.

Geshe Dadul Namgyal

By George Yancy

This is the first in a series of interviews with religious scholars from several faiths — and one atheist — on the meaning of death. This month’s conversation is with Geshe Dadul Namgyal, a Tibetan Buddhist monk who began his Buddhist studies in 1977 at the Institute of Buddhist Dialectics in Dharamsala, India, and went on to earn the prestigious Geshe Lharampa degree in 1992 at Drepung Loseling Monastic University, South India. He also holds a master’s degree in English Literature from Panjab University, Chandigarh, India. He is currently with the Center for Contemplative Science and Compassion-Based Ethics, Emory University. This interview was conducted by email. — George Yancy

George Yancy: I was about 20 years old when I first became intrigued by Eastern thought, especially Buddhism. It was the transformation of Siddhartha Gautama to the Buddha that fascinated me, especially the sense of calmness when faced with competing desires and fears. For so many, death is one of those fears. Can you say why, from a Buddhist perspective, we humans fear death?

Dadul Namgyal: We fear death because we love life, but a little too much, and often look at just the preferred side of it. That is, we cling to a fantasized life, seeing it with colors brighter than it has. Particularly, we insist on seeing life in its incomplete form without death, its inalienable flip side. It’s not that we think death will not come someday, but that it will not happen today, tomorrow, next month, next year, and so on. This biased, selective and incomplete image of life gradually builds in us a strong wish, hope, or even belief in a life with no death associated with it, at least in the foreseeable future. However, reality contradicts this belief. So it is natural for us, as long as we succumb to those inner fragilities, to have this fear of death, to not want to think of it or see it as something that will rip life apart.

We fear death also because we are attached to our comforts of wealth, family, friends, power, and other worldly pleasures. We see death as something that would separate us from the objects to which we cling. In addition, we fear death because of our uncertainty about what follows it. A sense of being not in control, but at the mercy of circumstance, contributes to the fear. It is important to note that fear of death is not the same as knowledge or awareness of death.

Yancy: You point out that most of us embrace life, but fail or refuse to see that death is part of the existential cards dealt, so to speak. It would seem then that our failure to accept the link between life and death is at the root of this fear.

Namgyal: Yes, it is. We fail to see and accept reality as it is — with life in death and death in life. In addition, the habits of self-obsession, the attitude of self-importance and the insistence on a distinct self-identity separate us from the whole of which we are an inalienable part.

Yancy: I really like how you link the idea of self-centeredness with our fear of death. It would seem that part of dealing with death is getting out of the way of ourselves, which is linked, I imagine, to ways of facing death with a peaceful mind.

Namgyal: We can reflect on and contemplate the inevitability of death, and learn to accept it as a part of the gift of life. If we learn to celebrate life for its ephemeral beauty, its coming and going, appearance and disappearance, we can come to terms with and make peace with it. We will then appreciate its message of being in a constant process of renewal and regeneration without holding back, like everything and with everything, including the mountains, stars, and even the universe itself undergoing continual change and renewal. This points to the possibility of being at ease with and accepting the fact of constant change, while at the same time making the most sensible and selfless use of the present moment.

Yancy: That is a beautiful description. Can you say more about how we achieve a peaceful mind?

Namgyal: Try first to gain an unmistaken recognition of what disturbs your mental stability, how those elements of disturbance operate and what fuels them. Then, wonder if something can be done to address them. If the answer to this is no, then what other option do you have than to endure this with acceptance? There is no use for worrying. If, on the other hand, the answer is yes, you may seek those methods and apply them. Again, there is no need for worry.

Obviously, some ways to calm and quiet the mind at the outset will come in handy. Based on that stability or calmness, above all, deepen the insight into the ways things are connected and mutually affect one another, both in negative and positive senses, and integrate them accordingly into your life. We should recognize the destructive elements within us — our afflictive emotions and distorted perspectives — and understand them thoroughly. When do they arise? What measures would counteract them? We should also understand the constructive elements or their potentials within us and strive to learn ways to tap them and enhance them.

Yancy: What do you think that we lose when we fail to look at death for what it is?

Namgyal: When we fail to look at death for what it is — as an inseparable part of life — and do not live our lives accordingly, our thoughts and actions become disconnected from reality and full of conflicting elements, which create unnecessary friction in their wake. We could mess up this wondrous gift or else settle for very shortsighted goals and trivial purposes, which would ultimately mean nothing to us. Eventually we would meet death as though we have never lived in the first place, with no clue as to what life is and how to deal with it.

Yancy: I’m curious about what you called the “gift of life.” In what way is life a gift? And given the link that you’ve described between death and life, might death also be a kind of gift?

Namgyal: I spoke of life as a gift because this is what almost all of us agree on without any second thought, though we may differ in exactly what that gift means for each one of us. I meant to use it as an anchor, a starting point for appreciating life in its wholeness, with death being an inalienable part of it.

Death, as it naturally occurs, is part of that gift, and together with life makes this thing called existence whole, complete and meaningful. In fact, it is our imminent end that gives life much of its sense of value and purpose. Death also represents renewal, regeneration and continuity, and contemplating it in the proper light imbues us with the transformative qualities of understanding, acceptance, tolerance, hope, responsibility, and generosity. In one of the sutras, the Buddha extols meditation on death as the supreme meditation.

Yancy: You also said that we fear death because of our uncertainty about what follows it. As you know, in Plato’s “Apology,” Socrates suggests that death is a kind of blessing that involves either a “dreamless sleep” or the transmigration of the soul to another place. As a Tibetan Buddhist, do you believe that there is anything after death?

Namgyal: In the Buddhist tradition, particularly at the Vajrayana level, we believe in the continuity of subtle mind and subtle energy into the next life, and the next after that, and so on without end. This subtle mind-energy is eternal; it knows no creation or destruction. For us ordinary beings, this way of transitioning into a new life happens not by choice but under the influence of our past virtuous and non-virtuous actions. This includes the possibility of being born into many forms of life.

Yancy: As a child I would incessantly ask my mother about a possible afterlife. What might we tell our children when they express fear of the afterlife?

Namgyal: We might tell them that an afterlife would be a continuation of themselves, and that their actions in this life, either good or bad, will bear fruit. So if they cultivate compassion and insight in this life by training in positive thinking and properly relating to others, then one would carry those qualities and their potential into the next. They would help them take every situation, including death itself, in stride. So, the sure way to address fear of the afterlife is to live the present life compassionately and wisely which, by the way, also helps us have a happy and meaningful life in the present.

Complete Article HERE!

I’m Going to Die.

I May as Well Be Cheerful About It.

By Mary Pipher

While death is inevitable, our attitude about it is not.

Generally, I don’t think about death during the day. My schedule is full, and I focus on what is right before my eyes. It’s usually only when I go to funerals that I reflect upon deaths past, present and future; most of the time I think about life. Still, about once a month I wake in the night and know with absolute clarity that I will soon be gone.

I have always felt my own finitude. My father had his first stroke at 45 and died at 54. My mother died of diabetes at 74. I am 72. I would like to attend my last grandchild’s high school graduation and meet at least one great-grandchild. However, with my family history, that is unlikely. Now, with the news filled with stories of the coronavirus, I am reminded of the many random diseases that can strike suddenly and lethally.

Like almost all my peers, I want to die young as late as possible. I don’t want to live beyond my energy level. I don’t want to suffer dementia or lie helpless in a hospital. I want to die while I still believe that others love me and that I am useful.

I have done what I can to prepare for my death. I have a will, a health care proxy and medical directives. I’ve had many conversations with my family and my doctor about end-of-life decisions. My mnemonic device for all of them is, “If in doubt, snuff me out.”

While death is inevitable, our attitudes about it are not. We can be sanguine or gloomy, solicitous of others or self-absorbed. We can approach our deaths with fear and resistance or with curiosity and a sense of mission.

Facing death offers us an opportunity to work with everything we have within us and everything we know about the world. If we have been resilient most of our lives, most likely we will cope well with our own dying. It is frightening, of course, but it is our last chance to be a role model, even a hero.

I’d like to face death with the courage of my grandmother. The last time I visited her, she was recently widowed and dying from leukemia. She lay in bed in her small home in eastern Colorado. I could see she was in pain and could barely move, but when I asked about her health, she replied: “Let’s talk about you. How is college going this year?”

When I complimented her on her courage, she said simply, “I am going to be in pain and die soon no matter how I behave, so I might as well be cheerful.”

By the time we are in our 70s, we are likely to have witnessed many people dying. I’ve seen my parents and my husband’s parents die “bad deaths” with months of suffering and too much medical intervention, and I’ve witnessed peaceful deaths in rooms filled with love. Most of us boomers know how to behave at a bedside and have a sense of how we want to act when it’s our turn to be the one in bed.

We also have had decades of observing the rituals of death — hospitals and hospice, funerals, burials and the communal meals afterward. From these experiences, we have learned what we do and don’t want when it’s our turn. We may continue some of these traditions, but we will also design our own. Some of my friends with terminal illnesses have hosted goodbye parties in parks or at our local blues bar. Wakes with dancing, music and storytelling are back in style. Many of us want pine box coffins, green burials or cremations with our ashes tossed in beautiful places.

What happens after death is a popular topic among people I know. Opinions range from, “We turn into dirt,” to “I will see the face of God.” My writer friends want heaven to have a good library. One friend believes we will return to the place we were before we were born.

Jean Nordhaus wrote, “The dead are all around us / feathering the air with their wings.” A therapist who lost her young, cello-playing husband told me she feels his presence and knows they are still deeply connected in spirit. She finds that many people are afraid to die because they have no language for the numinous; however, she is certain that neither life nor relationships end with death.

I feel death may not be as big a change as we suppose. Rather, it might be like crossing a river.

I like to think that my relatives and friends will be waiting for me on the other side. I like to imagine grassy banks and flower-filled pastures shining in the sun. I like to think a lot of things, but I don’t know for sure.

I am not a particularly mystical person, but I have had mystifying experiences. When my Aunt Grace died, I drove to the Ozarks for her funeral. Her little house was surrounded by pink surprise lilies — what my cousins called “naked ladies.” The next spring, even though I had not planted them and they had never come up before, surprise lilies popped up in my garden. The year after that they popped up again but in different places. I concluded that Aunt Grace was greeting me. If I wanted to send a message after death, I would do it with flowers, too.

I love the world but I cannot stay. Death is democratic and we will all participate in its enactment. I will miss the beauty all around me. I have taken so much pleasure in the natural world, in people and books, in music and art, in cups of coffee and lolling cats. If I knew that I had a month left to live, I wouldn’t spend my time much differently than I do now.

All of my life I have loved snow.

When I was a girl in the 1950s, snow fell often in the long winters of western Nebraska. I remember one winter when, after the streets were plowed, mountains of snow 10 feet tall stood in the middle of the streets. As a young mother, my favorite days were snow days when our family could stay home and play board games. I would make soup and popcorn. I relished taking my children outside to do the things that I had done in the snow as a girl. I loved falling asleep with my family safe on a blizzardy night when the streets were impassable and a blanket of peace covered our town.

Now, snow has become a profoundly spiritual experience. When it snows, I sit by my window and watch it fall. I go deep into its purity and softness.

Snow falls inside and outside of me. It settles my brain and calms my body.

I hope death feels like watching the snow grow thicker and thicker. Doctors call dying of a morphine overdose being “snowed.” I would not mind that at all. I would like to disappear in a whiteout.

Complete Article HERE!

A Chaplain on How to Talk About the Right to Die and Death With Patients

By Diane Rehm

Martha Kay Nelson has had a long career in hospice work. Rather than choosing hospice work, she believes hospice work chose her. Her training was at Harvard Divinity School. She did a yearlong internship as a hospice chaplain during her graduate work. The year after she graduated, she managed to combine her career as a chaplain with her work in hospice. She is in her mid-forties, with short hair and hazel eyes. Her warm, open face, earnest manner, and easy smile help me understand why she is so good at her work. We sit together in her office at Mission Hospice & Home Care in San Mateo, California.

DIANE: How do you feel about California’s “right to die” law?

MARTHA: Well, I have many feelings, and they could vary depending on the day or the hour. It depends on whom I’m talking to, and what her or his experience is. My overall sense about the law is that people have a right to make their own health-care decisions, whether it’s at the end of life or at any time up to that point. I know people have a hard time having these conversations, particularly early on, before they’re even sick. And then they get sick and it’s crisis time, and those decisions have to be made quickly. The End of Life Option Act to me is part of a spectrum of all those decisions and conversations that come at the end. It’s a new end point on that spectrum.

D: You’ve been in a leadership position here at Mission Hospice, not only learning, but teaching. Tell me what have been the elements of transmitting this information to others.

M: It’s been an interesting learning curve. I think even seasoned hospice professionals have had to adjust to a new option for patients, stepping into that terrain. The elements that have been important in teaching staff members, working with health-care partners, have been to get folks to acknowledge at the outset that this is a challenging topic, this is new terrain, there are profound implications, and not to shy away from it.

Some folks here at Mission Hospice didn’t want to participate, but the majority did, to have their questions answered or share some of their thoughts, their concerns. We’ve done this regularly enough that people felt they could talk freely about the End of Life Option Act. We didn’t want it to be whispered about awkwardly in the corner, that this law is coming and our patients are going to have the right to choose the option. As an agency, we’re not advocates for the law, we’re advocates for our patients, and we won’t abandon them. Having said that, any of our employees, if they’re not comfortable, don’t have to participate. They can opt out if they need to, and they would be fully supported.

D: What kinds of questions did you get from staff? What kinds of issues did they raise?

M: At the outset, a lot of general questions about details of the law, how it works, how are we supposed to communicate with our colleagues around it, what can we say to the patient and what can’t we, those kinds of things. Questions arose about accessibility to the law. If I have patients who are saying they just want to end it all, and they’re saying this a lot, but they’re not specifically asking about the law, then can I bring it up with them or not? We have a policy here at Mission Hospice that we let the patient lead. If a patient is inquiring about his or her options, then we will be there.

That’s one kind of question. Other clinicians have asked about folks who haven’t had the chance to be educated about medical aid in dying, or don’t have access to resources where they might have learned about it. What if it’s something they’d like to avail themselves of ? There’s kind of a social justice question there. There are also questions arising from specific cases. Every case is different.

D: Can you give me an idea of how many patients have actually come forward and asked you about the right to die?

M: We’ve been tracking some of these numbers, and to date, we’ve served around forty-five people since California’s law went into effect, which was a lot more than we anticipated. When back in 2016 we set out to draft our policy and prepare ourselves, we thought maybe we’d have four or five people in the first year. We had twenty-one. And about that same number inquired about the law, but never went all the way through the process. Either they actually died before they had a chance to use the law, or they changed their minds. I would imagine that it was split evenly.

D: Tell me about the process. So a patient comes to you and asks about the process, the law. How do you respond?

M: My initial response as a chaplain would be one of curiosity. I’d be interested in learning more about their thoughts and why they’re asking. It’s a big thing to ask about. Sometimes people are afraid to even inquire. They’re afraid of being shamed or judged. So I’d want to let that person know that I’m glad they’re asking. And then we’d have a conversation, whatever they would wish to say at that time. Next, I would contact the doctor and the rest of my interdisciplinary team members and would let them know the topic had been broached. Then a doctor would probably go and make a direct visit, which would be considered the first formal request, if the decision was made to pursue that course.

We really encourage the other team members to make sure they keep talking to one another—the social worker, the nurse, the spiritual counselor, home health aides, and volunteers who might also be involved. Through a team effort, we would need to have clarity on how much privacy the patient would want. Patients have the right under the law to not tell anyone but the doctors they’re working with, not even family members. Our experience has been that that’s not often the case. Usually there is communication with family.

D: Who makes the initial judgment that the patient has six months or less to live?

M: The attending physician on the case. And if the patient inquires about the law, and his or her doctor says, “I’m not comfortable being involved with this,” that’s one way we might get involved. Or it might be a hospice patient already on our service.

D: I saw in your waiting room a brochure for Death Cafes. Can you tell me about them?

M: The Death Cafe movement started several years ago in England. It’s basically having a conversation over coffee and cakes in a public venue. Anyone is welcome to attend, and the purpose is open-ended. The goal is to talk about death in any way you wish. There does need to be a facilitator, someone who is able to establish ground rules in etiquette so folks aren’t talking over one another. Folks that host them tend to have some level of experience in end-of- life care, in thanatology, but anyone can sign up. I’ve led a couple of them.

D: How successful do you think Death Cafes are as teaching tools, as comforting elements in the whole discussion of death?

M: I think Death Cafes are successful in meeting the needs of folks who already want to talk about death. If you show up at a Death Cafe, there’s something in you that is already ready to speak and to hear what other people are thinking. It can serve as a cross-pollination of ideas and thoughts, and normalization. The cafes meet a kind of thirst that we have in our culture to speak about these things openly and not be afraid. How you get people to Death Cafes is another question. I’ve had some people say they’re offended by that name, or they don’t want to attend a Death Cafe because it sounds morbid.

D: What is the best way to reach people? How do we get the conversation started even before we’re sick?

M: There’s no one best way. It’s about being creative and really getting to know your community. In my family, I’ve been lucky in that we’ve always talked about death openly. I have ongoing conversations now with my father. He’s about to turn eighty-three, and I really value the kinds of discussions and ruminations we have.

It’s wonderful. We’ve started kind of reflecting theologically, talking about, wondering together, what happens after we die. To be able to have that in a father-daughter kind of way. I’m well aware of what a precious opportunity it is to hear his thoughts. As he comes into the “lean and slippered pantaloon” time of his life, as he might say—some of his last chapters— I feel really blessed that he’s willing to discuss it openly.

D: How do you open that discussion for the general public?

M: I think it takes courage and a conscious decision to ask a question of someone in a moment when you feel there’s an opportunity. Someone speaking about her or his health, some decline, or illness, grief, and you ask, “How would you like things to be?” And perhaps even being a bit persistent if you get an initial brush-off, which often happens, but trying again, and saying, “ Really, I would like to know.”

I also think reaching children is important. I think that in our death-denying culture, children are really shielded from all things involved with death. Things happen at the funeral parlor, no longer at home, and we try to protect children in all kinds of ways. But if you don’t allow children who want to be involved in a loved one’s illness or death, I think you’re doing them a disservice. You’re keeping them from something that is integral to life for all of us. The earlier you can start to have those experiences and wonder about them and ask the questions, the more skills you will have as you age to meet them openly.

D: Have you decided what you want for yourself at the end?

M: I have no idea. I do know that I would like to have the right and the option to choose. I understand that even just knowing that the option is available can bring a lot of comfort to people. I haven’t faced a terminal illness that might cause me great physical pain or suffering, or mental or spiritual suffering. There’s one area that gives me pause, which is when folks choose medical aid in dying because they’re used to being in control in their lives. They might not have physical or mental or spiritual suffering, but they want to have personal agency. I think they entirely have the right to do that. But I also believe we’re in a culture that distorts the degree to which we think we’re in control. So on a soul level, on a much deeper level, I wonder, Are we messing with something there? How is it that we’re making such a profound decision from a place of a distorted need for control? And then I think, Well, what do I know about their journey and what they need? Maybe this is the one time they’ve ever made a strong, solid decision for themselves, and who am I to say what it is they need to learn?

D: But isn’t pain, intractable pain and suffering, and the inability to care for oneself, a sufficient reason to respect someone’s decision in terms of his or her final say?

M: Absolutely. I think clinicians have more trouble when they can’t observe visible intractable pain, when they can’t see physical or emotional suffering. It’s harder for clinicians to get their heads and hearts around that. Why is someone making this choice? And so I do a lot of counseling with staff about that, exploring how to meet the needs of the person when we don’t see them suffering, at least not on the surface. And we have to remind ourselves, clinicians need to express those feelings and concerns, so that when they’re dealing with patients directly, they can be respectful and meet them on their own terms.

Complete Article HERE!

The Pitfalls Of Extending Life And Prolonging Death

Humans 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.

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

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

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.

Finding the freedom to live and die well

By Mary Matthiesen

When people learn that I work with a hospice agency, many think I spend every day focused on death. In fact, we spend much more time focusing on quality of life and supporting what matters most to those we serve. This is one of the many lessons I learned from my mother as she was dying 15 years ago — a lesson that continues to inspire my life and my work.

My mother accepted her death with grace, and told those she loved that she loved them. She lived her final days at home, aligned with what mattered most to her.

Like my mother, most Americans expect their families to carry out their wishes for end-of-life care. However, 75% admit that they have never clearly articulated those wishes, and their children are often afraid to ask. As a result, while 80% of people say they would like to spend their final days at home with support, in reality, the vast majority die in institutions.

As hard as my mother’s death was for me as her daughter, I take great solace that we were empowered to support her wishes because she took charge of her own health care decisions.

Her actions also inspired me to consider and share what really matters to me for the end of my life — and all the days between now and an unknown then. Doing so made me feel lifted, lighter, and full of new energy for life. That experience in turn motivated me to help others make the most of their lives, and to prepare for their own future care.

In 2016, I joined Mission Hospice, with the goal of raising awareness of end-of-life issues within the areas of San Mateo and Santa counties. Mission Hospice was founded in 1979 by a group of nurses, neighbors, and friends who were dedicated to improving end-of-life care for their community — helping patients live their final months to the fullest by providing compassionate support to them and their families.

I believe deeply in the kind of care we can offer as a nonprofit hospice — which has become the rarity rather than the norm, both in California and nationally. Our commitment to patients over profit means we can offer alternative and complementary therapies that ease pain and increase quality of life. We can offer grief support for those in our community who need it. And, although hospice is a Medicare-covered benefit, we can serve patients regardless of their insurance or ability to pay. All of this thanks to the support of our incredible community of donors.

As a nonprofit, we also offer community education — opportunities to learn and talk about something we will all face. Every week, Mission Hospice hosts workshops, grief support groups, author readings, movies, and other opportunities to discuss life and death.

Together with local senior and health care nonprofits right here in Menlo Park, Mission Hospice led a coalition dedicated to creating a more compassionate community for people facing serious illness, death, and bereavement. Over the last few years, this group has offered dozens of free “Take Charge” advance care planning workshops throughout the Peninsula, helping people consider and express what’s most important to them, and then doing all that’s possible to ensure that loved ones and medical professionals can support their wishes.

In teaching others that we can each have the power and courage to choose the kind of care we hope for, I am following the lead of my mother — who was quite frankly the last person I expected to learn this from. Facing the reality of our mortality isn’t easy stuff, and it’s much bigger than a form or a single conversation. Yet it can give both the living — and the dying — great freedom in the end.

We’re all in this life and death thing together. By talking about what we want, learning the facts, and supporting each other along the way, we can truly be part of a community that cares — about living and about dying well. In the end, what matters more than that?

Mary Matthiesen, a Menlo Park resident, is chief strategy and integration officer for Mission Hospice in San Mateo. She is the author of “Dying to Make a Difference: One woman’s liberating journey to heed life’s call after her mother’s death and the legacy that’s possible when we do.”

Complete Article HERE!

The woman whose job it is to prepare people to die

She arranges everything, from finding long lost families to organising organ donation

by Abbie Wightwick

 

She’s only 26 but Claire Wretham is employed by a Welsh hospice to help people face death.

She is the youngest person in any of Marie Curie’s nine hospices nationwide in the role.

Watching her own grandmother have  “a beautiful death” inspired her to help others do the same.

“We all deserve a good death that celebrates life. I am helping people feel at peace,” she said.

As full time spiritual care co-ordinator at Marie Curie Hospice, Cardiff and the Vale , Claire answers any questions patients and their families have about life’s greatest mystery.

Marie Curie spiritual care coordinator Claire Wretham with her grandparents Maura and John Brosnan. Maura’s death in 2016 inspired Claire to take up her post.

“My grandmother died at home, a really beautiful death with all her family around her. We were able to facilitate for her the perfect death.

Penarth with everything from tracing lost loved ones to special religious or cultural requests, officiates at funerals and goes to local mosques,synagogues and church groups to talk about death and dying.

In an increasingly secular and diverse society her role at Marie Curie has replaced the traditional one of chaplain, although Claire still uses that term when first meeting patients.

“I introduce myself as chaplain because it really is a modern interpretation of that,” she explained.

“My age is mostly irrelevant. People often comment on the fact I am young but I don’t think it hinders my role.

“People my age group see the world differently and approach things in a different way.

“Part of my role is asking people “what makes you you, how would you describe yourself and how do you find peace?

“As younger people we often have lots of spaces and experiences to express ourselves, but some older people don’t feel the same freedom to express themselves, so I ask “who are you, what makes you you and what makes you comfortable and at peace?.”

A practising Christian, Claire was appointed to the job two years ago and is an “allied health professional”, not a medic, although she knows and can explain what may happen during dying and immediately after.

Her role as spiritual adviser was created in response to research that Marie Curie did in 2015 investigating how to improve access to palliative care for people with dementia, learning disabilities and people with different or no religious beliefs.

Sarah Lloyd-Davies, hospice manager at Marie Curie Hospice, Cardiff and the Vale, explained: Hospice care and chaplaincy services have long been rooted in the Christian tradition, as both developed at a time when Christianity was the majority religion in the UK.

“As the country has grown more diverse there has also been a trend in growing numbers of people identifying as nonreligious.

“The hiring of a spiritual care coordinator to replace the traditional chaplain role at the Marie Curie Hospice Cardiff and Vale reflects the feedback from our local community, which recognises that one person and one approach cannot meet everyone’s spiritual needs.

“In order to make sure our services are truly inclusive and person-centred, we need to focus on connecting with belief-based communities and exploring new ways of providing spiritual care so we can ensure people feel supported in the best way for them at the end of their life.

Whatever background people come from death and dying are still taboo subjects which Claire must help them face.

“A lot of my job is myth busting and explaining to people how it works at the hospice and what they can expect as they come to the end of their life,” the 26 year-old said.

“Questions I would normally ask are whether they have any spiritual or religious needs and whether they have a faith or anything that’s a source of comfort.

“If they are religious I will discuss that with them – for instance if they are Catholic and want the last rites I liaise with their priest, if they are Muslim and want their bed facing Mecca and halal meals my job is to arrange that and liaise with nursing staff about it.”

There is “no formula or prescription” for talking about death so Claire begins with a few questions.

“It’s about asking questions to get people to explore death or go away and think about it.

“The sort of questions I’ll ask are things like – have you got any unfinished business or anything you want to tie up? That can be relationships, writing a will, funeral planning, making amends with estranged family members , and how we can help with that, if we can.”

When patients tell her they are scared of dying she tries to remove some of the mystery around it to reassure.

“If someone is scared of dying a big part of it, from my point of view, is explaining what will happen when they die.

“There are lots of misconceptions about pain relief. They want to know what it will feel like. I explain that they will probably just fall asleep more.

“I explore with them what they think that will be like. There is nothing you can say really, ultimately it’s something people form their own ideas about.

“I may also ask people what they want their legacy to be. Some people think there is nothing after you are dead so I’d ask them how they want to be remembered.”

But she doesn’t push it if people don’t want to talk.

“We live in a culture where it’s normal to talk about things but the idea of a chaplaincy and spiritual support is so alien to some people that they say no, they don’t want to talk to me.”

As she doesn’t have all the answers Claire tries to keep things practical when explaining what happens after death in a hospice.

“I know what a dead body looks like, where you go after death and what the crematorium looks like.

“My main technique is to remove any confusion. I do ask people if they are frightened and how I can help them not feel afraid.

“Most of the time people are worried about “what’s happening next and what about the pain?”

“I think death is so difficult to talk about because we don’t see death often. The majority of deaths happen in hospital. People don’t know what death looks like.

“For us in a hospice a huge part of our role is pulling the curtain on that. Lots of people come in asking really big questions and having misconceptions.”

These include controversy and suspicion surrounding syringe drives to administer pain relief and the mistaken beliefs about how they are used.

“People are horrified by the syringe driver. It’s in a locked box and nurses replenish pain killers. It is controlled pain relief. Some people think it is a death sentence, but it’s not. Sometimes people have a syringe driver for pain relief and then have it removed.”

“On the other hand some people say “can I have the drugs now?”. That’s not legal and not what hospices are about.”

“When we talk to people here about donation it’s usually only corneas because they can’t donate anything else. Some people say “you can take anything but not my eyes, but I have watched eyeball removal and it is really amazing because one cornea can be used to help eight people.”

It is Claire’s job to arrange any donations. She recalled one case when she arranged for a motorbike to collect the brain of a patient with motor neurone disease who had requested it be donated to medical science – something that had to be arranged within 72 hours.

“I spent all day organising brain removal and that afternoon someone came down from London on a motorbike and took it back for donation to medical science.”

Although her job does involve these practical matters it is also a matter of listening to people at what can be the hardest time of their lives.

“My job is varied Once a man came in and said his father had died here 28 years ago. He said he had never visited Wales and now lives in Canada but had flown into Cardiff to see where his father died.

“I showed him around the hospice and talked to him about his grief and about Penarth. He was very tearful, he had flown all the way from Canada to see where his dad died, but he was able to resolve his grief.”

Surrounded by grief and death on a daily basis Claire says it is not morbid but a privilege to help people.

“Death happens to everyone. It’s coming to all of us. We should look to normalise it.”

Complete Article HERE!

‘It was kindness and it was a mercy’:

The doctor helping people to die

Oncologist Cameron McLaren

By Melissa Cunningham

It was just after 2pm on October 31 when oncologist Cameron McLaren arrived at Phil Ferrarotto’s house on the outskirts of Melbourne to help him die.

Dr McLaren had never administered a fatal drug to a terminally ill patient before. He was struck by the magnitude of what he was about to do.

“I had no idea if I was going to be OK with it even up to the point where I put the needle to his arm,” Dr McLaren said. “But there was no question that this was the right thing to do for Phil. It was what he wanted. It was kindness and it was a mercy.”

Phil hadn’t eaten for days. No longer able to digest his medication, the 70-year-old was hooked up to an intravenous morphine drip and sustained by spoonfuls of cola-flavoured ice.

He lay in bed with his daughter Katie and wife Dorrie curled up on either side of him. They cuddled his frail body and watched his chest rise and fall with each painful breath.

His son Glen and son-in-law Ryan came into the room with three glasses of aged Glenfiddich whisky; one for each of them and one for Phil.

They toasted Phil as Dr McLaren gently swabbed the father-of-two’s arm with medicinal alcohol.

Phil Ferrarotto

Dr McLaren found a vein and inserted a cannula. He used the thin tube to inject a sedative medication, before administering an anaesthetic and a muscle relaxant.

Phil began to drift off within minutes of the drugs flowing into his bloodstream. The circle of his family closed in around him. They held his hands and told him how much he was loved. “Be happy,” Phil said, before he took two final, deep breaths.

Dr McLaren has helped two dozen terminally ill Victorians apply for permits to end their lives since the state’s voluntary assisted dying laws came into effect on June 19. Eleven of them have since died using the legislation.

All the patients Dr McLaren has assessed so far were in intolerable pain and often bedridden.

“The number one reason people are doing this tends to be more the existential suffering,” Dr McLaren says. “It is the loss of joy, the fear of losing dignity and the fear of losing autonomy and of being a burden to family.”

Cancer-stricken patients surrender their bodies to years of treatment they know will cause them pain and discomfort, Dr McLaren said. He wants to give people control at the end of their life.

“It is one last decision about their body which is entirely theirs,” he said. “This is something we do for animals and when they get too old and they are suffering greatly. We put them out of their misery and we call it humane. Why shouldn’t we afford humans the same humanity?”

When Dr McLaren first met Phil he was sitting in an armchair in his living room hooked up to an oxygen concentrator. The cancer had spread from his bladder to his lungs and had riddled his bones. Then it invaded his liver, causing his belly to swell and fill with fluid. Opioids prescribed to Phil did little to dull his pain. Each breath was agony.

This kind, strong-willed, clever, retired general manager, who had battled four different kinds of cancers over the past 18 years, was frank and direct.

He told Dr McLaren he wanted to end his own life.

Dr McLaren carefully assessed Phil. He ticked off all the strict criteria; over the age of 18, of sound mind, an Australian citizen with less than six months to live. He referred Phil on to a second doctor who also deemed Phil eligible for the scheme.

Before his application was approved an email from Phil arrived in Dr McLaren’s inbox: “This gives me no pleasure in begging you to end my life, but I have no one else to turn to. I’m struggling with every breath I take and I can’t do it anymore.”

A permit for a doctor-administered death was approved the same day by the Voluntary Assisted Dying Board with Dr McLaren agreeing to administer the fatal dose.

For days after Phil died, Dr McLaren was waiting for the “hammer’s fall”.

“I was really concerned about the fallout for me, personally and emotionally,” he said. “I was concerned about being recognised as ‘that’ doctor and the impact it might have on my family and my work.

“I didn’t question what I did, because in Phil’s case, he was in the last days of his life and he was going to die within 48 to 72 hours. I was able to provide him a death that in his mind was dignified. It didn’t cost him anything. It cost him his suffering.”

The fallout never came.

“It was a lonely experience because there’s no literature review you can read on it,” he said. “It still does feel lonely because there’s not a lot of us doing it.”

The night Phil died, Dr McLaren picked up his two year-old daughter when he got home and held her in his arms. His love for his child overwhelmed him and he pressed his face against hers.

“As I was holding her I thought of Phil being surrounded by his family as he took his final breath,” he said.

“Nothing that we could have done would have avoided his death, but we were able to make sure Phil  died at home in the arms of the people who loved him most. I thought, yeah, that would be a nice way to go.”

Before he died, Phil wrote a letter to Dr McLaren thanking him for what he was doing:

Complete Article HERE!