Category: Death Education

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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↩!

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Dates With Death

When My Time Comes

Diane Rehm poses for a portrait at her home in January. After more than three decades and thousands of programs, she’s stepping away from the broadcast microphone.

By Amy Kepferle

“My mother begged to die,” Diane Rehm writes in the preface of her new book, When My Time Comes: Conversations about Whether Those Who Are Dying Should Have the Right to Determine When Life Should End.

“There was no hope of recovery,” she continues. “There was nothing more they could do to ease her pain or to keep her comfortable. She died suffering.”

Rehm, a beloved National Public Radio talk show host and bestselling author, wondered why she’d had to watch her mother endure the horrific effects of non-alcohol-related cirrhosis for so long, and why she didn’t have the right to choose when she’d had enough.

The subject again became personal in 2014 when her husband of 55 years, John Rehm, decided to end his life when the side effects of Parkinson’s disease became overwhelming. He couldn’t use his hands, could no longer feed himself or use the bathroom on his own, and slept for most of the day.

“Because John could not receive medical aid in dying, he had to starve himself and go without medication for 10 days, until he died,” she relates during a chapter focusing on an interview with palliative care physician, internist and geriatrician Christina Puchalski. “I as his wife could do nothing but watch him suffer.”

Puchalski’s take on Rehm’s story is an interesting one. Although she has plenty of compassion for those who are facing their final journey, she has concern that in states where assisted suicide is legal—like Washington, Oregon, Maine, Vermont, California, New Jersey, and Colorado—people might be too quick to seek medical aid to quicken their deaths. She believes palliative care and hospice care can help with pain and symptom management, and can also be done with dignity.

“Are we giving a message that when you get to that point, there’s not a lot of opportunity for meaning and purpose and joy?” Puchalski asks.

At 83 years old, Rehm is a clear proponent of the right-to-die movement. But in When My Time Comes, she uses her interviewing prowess to explore the topic in ways that go beyond a simple “yes” or “no.” She questions terminal cancer patients—one of whom moved to Oregon so she’d be able to end her life on her own terms—and widowed spouses, doctors, death educators, reverends and Roman Catholic priests, constitutional law professors, attorneys and politicians for their opinions.

It’s heady reading, especially when hearing from those who know they’re running out of time. But it’s also a reminder that life is fleeting, and that it’s better to let your family and loved ones know what you want before its final chapter.

At the end of the book, Rehm even talks to her grandson, asking him to record their conversation on his iPhone for posterity. She then tells him that if she’s terminally ill and there is no reasonable expectation of her recovery from mental or physical disability, to let her die and not be kept alive by artificial means and heroic measures.

During “A Conversation with Diane Rehm” Tues., Feb. 11 at Sehome High School, the retired radio personality will be in conversation with local author Phyllis Shacter, who—like Rehm—watched her spouse choose to die via Voluntary Stopping Eating and Drinking (VSED) rather than live into the late stages of Alzheimer’s. The discussion is sure to be a fascinating one, and may help give attendees a clearer look at the bigger picture.

Complete Article ↪HERE↩!

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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.

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Facing the Fact of My Death

As a child, confronting my mortality was terrifying. Now it is an opportunity.

Mr. Yancy is a philosopher and professor.

By George Yancy

As a young boy, I recall very clearly telling my mother with an innocent defiance that I wished that I had never been born because I will die someday. I can’t recall her response, but I’m sure it worried her and left her feeling hurt. But I was frustrated, angry, afraid. While I knew that people died, it had suddenly dawned on me that I would be among them, that I will die someday. It was an epiphany — one I would rather have not had. I recall thinking, “I didn’t sign up for this. Who is playing this terrible joke on me?”

Strange, I realize, but there I was — a child, elated to be alive, feeling the warmth of the sun on my brown skin, playing with friends in the streets, eating ice cream, celebrating birthdays, enjoying unconditional love shown to me by my mother and my older sister. Why did I have so much joy and shared love just to someday have it all taken away, gone forever? And I understood “gone forever” to mean never ever existing again. Done! Kaput! It made absolutely no sense to me.

I experienced the fact of my death as a cosmic slight. I could not get it out of my head. Even at that young age, I began to feel the heavy weight of my finitude. I couldn’t put it down, even though I wanted to. Death was now too close.

It was dreadful. That sense of unthinking longevity, invulnerability, cavalier confidence — hell, just being a child — gave way to a deep and frightening reality that I could not control. The childlike omnipotence collapsed and left me facing an abyss. The abstract fact of death had become personal. I had come to realize that not a single moment is guaranteed, not another breath, another blink of an eye, another hug from my mother or clash with my sister.

As I grew older this feeling of existential dread stayed with me — of being thrown into existence without any clear sense of why we’re here, of wondering whether or not God exists, whether or not the cosmos has any meaning beyond what we give it, whether or not we have immortal souls, whether there is anything to be discovered after death or whether death is the final absurd moment of our being. I was like the French-Algerian existentialist Albert Camus, who wrote of having “conscious certainty of a death without hope.”

As an adult, this uncanniness goes unabated; it has not stopped. There are times when, like the 17th-century thinker Blaise Pascal, I feel trapped between two infinities of meaninglessness. In his unfinished work, “Pensées,” Pascal writes, “When I consider the short duration of my life, swallowed up in an eternity before and after, the small space I fill engulfed in the infinite immensity of spaces whereof I know nothing, and which know nothing of me, I am terrified. The eternal silence of these infinite spaces alarms me. I wonder why I am here rather than there, now rather than then. Who set me here? By whose order and design have this place and time been destined for me?”

The fact of death is like a haunting. It frequents me, entangled in everything I do: It’s just beneath my pillow as I sleep, strolling next to me as I casually walk from one class to the next, inserting its presence between each heart beat in my chest, forcing its way into my consciousness when I say “I love you” to my children each night, assuring me that it can unravel the many promises that I continue to make, threatening the appointments that I need to keep. This sense of haunting is what the Harvard professor Cornel West calls the “death shudder.” Of this “shudder” in the face of death, he writes, “Yes, dread and terror were involved, but also perplexity. Exploration. Where does nonexistence take you? What does it mean to be stripped of your own consciousness? How do we live with the idea that we are always tantalizingly close to death? At any moment the bridge can collapse.”

I continue to shudder. Yet there is something about facing the fact of death that invites us to double back, to see our existence, our lives, differently. The scholar Mark Ralkowski, reflecting on Martin Heidegger’s notion of “being-toward-death,” writes: “In rare moments, we can be returned to ourselves by an experience of anxiety (Angst), which disrupts the tranquillity of the everyday world by emptying it of its usual significance and meaning. In these moments, none of our projects or commitments makes sense to us anymore, and we see that we are committed to roles prescribed to us by das Man” — which means “the they” or “the crowd.”

I want my students to experience one of those “rare moments,” to consider the short duration of their lives. To get them to think differently about our time together, to value their lives differently, I make a resolute effort to remind my students that all of us, at some point, sooner or later, will become rotting corpses. That, I explain, is the great equalizer. No matter how smart, brilliant, wealthy, beautiful and fit you are, no matter how great your MCAT, LSAT or G.P.A. scores, no matter your religious or political orientation, we will all perish.

After hearing this, students will often become completely silent. There is a sudden recognition that something has been haunting our joy, our unquestioned and collective happiness, our sense of “permanence.” It is palpable. No matter how many times I’ve decided to remove the veil, the sting of our collective finitude continues to hit me, along with the reality of bodily decomposition and putrefaction. The unspoken reality of death, which is the haunting background of our lives, shakes my body; I mourn for me and my students, and humanity.

Yet a clarity emerges. My students and I see each other differently, perhaps for the very first time. We are no longer simply students and professor, but fragile creatures and mysterious beings who have been dying from the moment we were born in a universe with no self-evident ultimate meaning. Something as previously uneventful as sitting next to one’s fellow classmate takes on unspeakable value. That shared understanding, vulnerability and mutual recognition of collective destiny makes our time together even more joyful, even more precious.

I’m not sure if the “death shudder” will ever abate while I’m alive. And I am no closer to understanding the fact that I exist or why I must die. I don’t seem to be able to achieve the necessary adjustment, the solace of acceptance. In his “Tractatus Logico-Philosophicus,” Ludwig Wittgenstein writes, “It is not how things are in the world that is mystical, but that it exists.” Wittgenstein helps to give voice to something mysterious about our being: It is that we exist, and that we will die, which is so uncanny. It is that both life and death are inextricably braided together that elicits the shudder. And the shudder and the uncanniness point beyond mere facts. They function, at least for me, as gestures, as intimations of a beyond, that enthrall my soul.

So, sooner or later I will die. I’m assured that it will happen. I know that if you are reading this article 100 years from now, I will no longer exist. I will have paid the debt for the gift of being. Death is our collective fate. Yet so many of us fear to talk about it, fear to face it, terrified by the idea of nonbeing. But we must face our destiny, our rendezvous with death. Indeed, the concept of death is a deep and perennial theme in philosophical and theological-religious thought; it is one of the Big Questions. As the philosopher Todd May writes, “Of course, most religions don’t claim that we don’t die. But there is, for many religions, a particular sense in which we don’t really die.”

It is in this spirit of exploration that I will interview 12 deeply knowledgeable scholars, philosophers and teachers, one each month, about the meaning of death in their respective traditions, including Hinduism, Buddhism, Islam, Christianity, Zoroastrianism, Judaism, Jainism and others. I will be asking questions like: What is death? Why do we fear death? Is death final? Do we have immortal souls? What role does death play in how we ought to live our lives?

The objective is not to find definitive answers to these eternal questions, but to engage, as my students and I try to do in our classes, in a lively discussion about a fact that most of us would rather avoid, and move ourselves a little closer to the truth.

Complete Article ↪HERE↩!

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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↩!

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How Men Grieve

Face this profound challenge by staying connected and finding friends who will listen

By Jackson Rainer

A friend asked with genuine concern, “How are you?”

“I’m OK. Not very happy, never am. I think the world is a pretty crazy place, but I’m OK,” I replied.

“Really? You look troubled. I’m asking because I want to know how you are … really,” she said.

Even with the loving nudge, I said, “Really…I’m fine.”

I was not fine and apparently it was more obvious than I wanted to admit. Now several years after my wife’s death, I am still feeling, with alarming frequency, the cloying sense of loss due to the absence of my “better half” with whom I lived and loved most of my adult life.

Even though I am well trained as a psychologist and have years of my own psychotherapy, I am generally loath to admit this ongoing sense of loneliness to myself, certainly not to anyone else.

Minutes before my friend’s inquiry, I was giving myself a good talking-to, thinking out loud, “You are just going to have to bear this and live with it. You are in this all alone, big boy. Get used to it.”

Defaulting Into Solitude Rather Than Connection

Understanding the way men grieve has new and deeper meaning for me as a widower. I’ve studied the phenomena as a researcher and clinician for years. Experiencing life after loss is fundamentally different territory from thinking about life after loss. Contemporary theories suggest that men and women express grief along a continuum of styles ranging from those called intuitive, centering on the expression of affect, to those called instrumental, who find physical and cognitive expression more palatable.

Men tend to lean toward the instrumental expression of grief, orienting to emotional control, a disinclination to talk about matters of the heart, to default into solitude rather than connection and to focus on action more than talk. I fall squarely in this masculine camp.

Young boys are socialized in ways that profoundly impact the expression of grief as adult men. Though the social and interpersonal needle has moved toward open expression of feeling as acceptable and desirable, most of us guys hear our Y chromosome rattle when we are asked to put words to heartbreak, confusion, vulnerability and the sense of “free-falling” without intimate support.

We tend to close down opportunities for connection and authentic support while adapting to the world in the absence of our loved one. Stoicism is valued more as a marker of independence and dignity, while vulnerability feels dangerous, weak and ill-advised.

The cultural expectation about what constitutes healthy grieving holds that to heal, a person must speak of, process and “work through” personal thoughts and feelings, sharing them out loud and in the presence of others. In this rubric, the bereaved person adapts to the world in the absence of their loved one by maximizing social support and investing in other relationships and meaningful activities.

However, for many men, the pain of grief is absorbed and processed differently. While the grief experience naturally creates opportunities to turn inward and slow to a more deliberate pace of life, when viewed through a traditional male social lens, this feels threatening, since masculinity typically is equated with striving, moving and activity.

Helpful Road Markers for Healing

So, if it is the case that men typically grieve in a different way than women, how can the experience be processed in a healthy and meaningful way? There are several road markers that are helpful:

Find a safe place to mourn. The Jungian analyst Jerry Wright says, “Go to the place you call holy and weep.” Having one or two confidants who serve as witnesses to another’s grief may enhance the sense of anchoring to the world. Those friends who can listen and be present without judgment are invaluable, particularly when loneliness feels isolating, cold and prickly.

Stay active. Depression is insidious and seductive. Withdrawing from the world leads to a sense of stuckness. As noted, there is value in finding friends who can offer activity, companionship, collegiality and time for reflection. Many men report that sharing vulnerable and tender emotions and thoughts is easier in the context of activity.

Be careful, though. There is one activity that doesn’t particularly heal: work. While throwing yourself into work is distracting, it creates distance from the time and space needed to heal. Certainly, productive activity is necessary and good to make it through the day. But work can be agitating and complicating to the attribution of meaning of the loss.

Know that there is no one way to grieve correctly. Many people hold opinions about “how you’re doing.” Most are loving, but they are like another’s clothes: they may neither fit nor be to your taste. Honest, personally felt acknowledgement of the loss and its day-to-day impact is more relevant, whatever form it takes.

For some, mustering strength and activity is effective. For others, becoming thoughtful and analytical about the death makes sense. For many men, the expression of new or unusual feelings, such as anger or living on the verge of tears, is alarming. The bottom line is found by staring the loss in its face and feeling whatever comes from this profound challenge.

Avoid clichés. Not long ago, an old friend who knows a great deal of my personal path of grief, asked after me. “I’m sitting up and taking nourishment,” I laughed snarkily, while hoping he would leave me alone. Rather than dismissing me or a making a bad attempt to provide a simple solution to my difficult reality, he said, “Let’s go to lunch and visit.” He heard past the funny cliché and invited himself into my world. We had a lovely meal and I was better for being with him.

Make contact with others. Grief teaches a hard lesson. Rather than waiting for others to seek me out, which will not happen (life goes on quickly for everyone except the mourner), I must put one foot in front of the other and find those people in places and events that entertain, satisfy and engage me. Men who mourn will need to tell others how to  invite contact. Remember to be prepared with a ‘yes’ to most invitations that come along the way, even when psychic energy is at a premium.

Be aware of holidays. Holidays and personally significant days provide psychological punctuation to our lives. Such days emphasize our loved one’s absence and bring corresponding pain. Holidays are oriented to family, tradition, continuity and familiarity. Recognizing that such days will unfold differently because of the loss will give a bit of perspective while still honoring the loved one’s death.

Watch for warning signs. Because many men are prone to run and hide from the experience of grief, real problems may emerge. The warning signs warranting careful attention are:

  • Depression lasting longer than two weeks or withdrawal from activities of daily living
  • Deterioration in family and friends’ relationships
  • Physical complaints, such as headaches, fatigue and low back pain
  • Chronic anxiety, agitation and restlessness, characterized by ruminations, obsessions or insomnia
  • Alcohol or drug abuse or dependence
  • Indifference toward others, insensitivity and workaholism

Complete Article ↪HERE↩!

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How to love dying people.

It can be heartbreaking to hear that a loved one facing death has decided to give up the ‘fight’. Here’s how to love them through it.

By Tammy Faulds

It’s mid-January. The post-holiday glow has most definitely worn off and I’m now leaning on my fave comfort food to help get me through winter. Yep, am here nibbling on some chocolate almonds while writing this to you because I’m about to dive into a touchy topic.

Let’s begin by saying…

Death is deeply ordinary. 100% inevitable. And as natural and necessary as being born.

As a society, we treat death like the enemy (instead of the goddess of wisdom that she is). We fight ‘til the bitter end, this “battle” that we won’t ever win. This battle against death (and the obsession with youth it creates) is seen everywhere in our science and culture.

Which means it can be heartbreaking to hear that a loved one facing death has decided to give up that fight. To accept what’s coming. To make peace with a battle they know they aren’t going to win. To refuse any more treatments. And sometimes, even to choose a medically assisted death.

M.A.I.D. stands for Medical Assistance in Dying and it’s been legal in Canada since June 17, 2016.

First, a few stats to set the scene. The total number of medically assisted deaths in Canada between December 2015 and October 2018 was 6,479 or roughly 1% of the estimated total deaths in Canada during that time.

It’s split pretty evenly between men and women. But those of us in urban centres are more likely to seek out these services.

There are a number of guidelines in place to make sure that MAID isn’t abused. You have to be “eligible” and of sound mind. Three doctors must all independently agree that you qualify. Currently, there’s a minimum 10-day waiting period to make sure this is really what you want. And you can change your mind – right up to the last second – if you want to.

But it’s still controversial.

MAID bumps up against our morals and ethics and religious beliefs. It asks us to think about how we want to live and more importantly how we want to die (if you even believe that you have the right to choose).

It can be agonizing to hear that a loved one is ready to die. Especially if we aren’t ready to let them go.

There’s a fantastic episode of Grace and Frankie (season 6 is out now!) called “The Party” where their friend has decided not to fight the cancer that’s returned. We watch Grace and Frankie navigate their friend’s request to throw an epic ‘exit’ party and help her die. The show deals with this subject with such compassion (and of course, their signature sense of humour) it’s definitelyworth watching.

So let’s talk this through, shall we?

HOW DO YOU SUPPORT A LOVED ONE WHO HAS CHOSEN MAID?

Acknowledge that this is NOT ABOUT YOU

Which is hard because their death most definitely impacts you. And your ego, once it’s recovered from its shock, will start wringing its hands and wondering what your life will look like without this loved one. It’ll be afraid of losing the person you were when you were with them. And your ego will most definitely not want things to change, or the pain that comes with change. It’ll want to avoid this at all costs. Even if it means asking your cherished one to extend their life, to keep fighting, just a little longer so you can avoid the pain and grief their death will bring.

Here’s what I want you to remember: it’s not about you (no matter how much it feels like it is). This is THEIR journey. Trust that they know what they need. And, deep down your soul knows it’s going to be okay. It’s going to hurt, yes, but it’s going to be okay. So listen to your soul.

Get help

For you. Find support for yourself so that you can show up for your loved one who has chosen MAID. Maybe this looks like talking to a trusted friend, therapist, or coach.

Establish rituals that will help YOU during the transition. What do you need? Maybe you can schedule some time off. Or, one of my personal favourites is hitting the yoga mat. Allowing movement and breath to begin to allow those emotions to move through me. Maybe you can light a candle for your loved one.  Pray. Journal. Meditate. Walk. Do some kick-boxing. Take a bath. Let your intuition guide you. (more ideas for honouring your griefhere)

Empathize

Be a heart with ears for your friend or family member choosing medically assisted death. We can’t ever truly know what it’s like to walk someone else’s path. But we can listen with open hearts. Connect with compassion. And if the moment calls for it? Grieve together (more ideas on how to show up for someone who’s grievinghere).

Plan

If planning is your forte help them with plans for their funeral. Or a living funeral. Or a celebration of life service. Whatever they want. A big, loud, joyful party or intimate, sacred and peaceful. There’s no wrong way to do this.

The rituals and ceremonies we create around the ending of life aren’t just a reflection of our culture or beliefs. These rituals allow us to begin processing all the complex emotions that accompany grief. They help us to take meaningful action. To gather in community. Because action is necessary to heal from loss and helping plan their ‘exit’ party can be a beautiful offering.

Shift your perspective

This is gonna fall under the category of “easier said than done” advice. But what if you saw this time together (however much is left) as a gift?

When death is unexpected one of the things grievers want more than anything…is more time. Time to say I love you. Time to just be with the person.  Even just one more day with their loved one. You’ve got that. Cherish it.

Honesty

Take time to ask the questions you have to. Resolve any conflicts. Ease any discomfort between you. Above all, have honest conversations because we certainly don’t have time for bullshit in our last days on earth. And if you can’t quite say it out loud – try writing it in a letter.

When we implore our loved ones not to give up, to keep fighting, we rob them of the opportunity to go peacefully on their terms. We take away the deep KNOWING they have about their approaching death and ask them to doubt themselves. We give false hope.

We’d never ask our family member or friend to live their life according to our terms.  We can’t ask them to die on our terms.

If we loved them in life, even when life got messy (and really, when is it not messy?!) then we need to love them enough to make dying okay too.

Complete Article ↪HERE↩!