Rethinking Dying, Part 2


What really matters at the end of life

At the end of our lives, what do we most wish for? For many, it’s simply comfort, respect, love. BJ Miller is a hospice and palliative medicine physician who thinks deeply about how to create a dignified, graceful end of life for his patients. Take the time to savor this moving talk, which asks big questions about how we think on death and honor life.


What Is a “Good Death”?



These days, everyone from poets to professors, priests, and everyday folks all opine about what makes a “good death.” In truth, deaths are nearly as unique as the lives that came before them — shaped by the combination of attitudes, physical conditions, medical treatments and people involved.

“A good death can, and should, mean different things to different people,” says Haider Warraich, MD, author of “Modern Death – How Medicine Changed the End of Life.” “To me, it means achieving an end that one would have wanted, and that can really mean anything – from being in the intensive care unit, getting all sorts of life-sustaining therapies, to being at home, surrounded by family, getting hospice care.”

Still, many have pointed to a few common factors that can help a death seem good — and even inspiring — as opposed to frightening, sad, or tortuous. By most standards, a good death is one in which a person dies on his own terms, relatively free from pain, in a supported and dignified setting.

“I think what makes a good death is really different for every individual, but there are some common threads that occur with each person I’ve seen,” says Michelle Wulfestieg, executive director of the Southern California Hospice Foundation (SCHF) and author of “All We Have is Today: A Story of Discovering Purpose.”

Some of patients’ most common end-of-life priorities include being at peace spiritually, knowing that they have the support of loved ones, having their affairs in order and being reassured that they won’t have a painful death, says Wulfestieg, who has worked in hospice care for 14 years.

Having affairs in order

Not everyone has the luxury of planning for death. But those who take the time and make the effort to think about their death in advance and plan for some of the details of their final care and comfort are more apt to retain some control and say-so in their final months, weeks and days.

Legal specifics of such planning can include taking steps to get affairs in order by:

For those considering hospice care at the end of life, another crucial end-of-life planning step is to elect the hospice benefit under Medicare, notes Joseph Shega, MD, national medical director for national hospice care provider VITAS Healthcare. He points out that hospice care is covered by Medicare, along with most health insurance providers.

Richard Averbuch, Executive Director of the Massachusetts Coalition for Serious Illness Care, cautions not to wait until a serious illness or crisis before planning for end-of-life care.

“The best time to name a proxy and talk about your preferences is now – whatever your stage of life. Think of it as part of your overall wellness program – just as important as preventive care, an exercise regime, and a good diet,” he says. “And you need to revisit the conversations periodically, since your feelings may change as you age or as your health status changes.”

Controlling pain and discomfort

Most Americans say they would prefer to die at home, according to recent polls. Yet the reality is that some three-quarters of the population dies in some sort of medical institution, many of them after spending time in an intensive care unit.

Part of that may be due to misunderstandings about the different options for treating a patient’s pain in their final days.

“There are still people who are uncomfortable with the use of pain medications at the end of life, even as their use is essential for the patients who are in pain,” says Warraich.

As life expectancies increase, more people are becoming proactive. A growing number of aging patients are choosing not to have life-prolonging treatments that might ultimately increase pain and suffering — such as invasive surgery or dialysis — and deciding instead to have comfort or palliative care through hospice in their final days.

Ways to help ensure a “good death” on an emotional level

Along with the practical matters of having one’s affairs in order, it’s equally important to prepare for death emotionally, to spend time with loving people toward the end of life, and to have spiritual sustenance.

Having few regrets

“Patients really want to know that their life had purpose, that they made a difference and that their lives mattered,” says Wulfestieg. “It has to do with family a lot of times, saying those I love yous and goodbyes.” The SCHF often works to reunite dying patients with family members,

including those who have long been estranged.

Often quoted among hospice care providers and in the literature on death and dying are the tenets in “The Four Things That Matter Most“, by Ira Byock, a medical doctor who professes the need for a dying person to express four thoughts at the end of life:

  • I love you.
  • Thank you.
  • I forgive you.
  • Forgive me.

At the time Caring.com spoke with Wulfestieg, her organization was preparing to reunite Marilyn, a woman with ovarian cancer and only a few weeks to live, with her three estranged adult children and grandchildren.

Due to Marilyn’s problems with drugs, alcohol and crime, all three of her children grew up in foster care, and she’d lost contact with them. Her dying wish was to have a family meal with her children and grandchildren, so SCHF have arranged to fly out Marilyn’s family members to make it happen, Wulfestieg says.

“That’s really her dying wish, to be able to say ‘I’m sorry, I love you and goodbye,’” she says. “It’s really a story of grace and forgiveness and hope.”

Receiving mindful care and support

The right company can help aid a “good death.” Although dying may be scary or sad or simply unfamiliar to those who are witnessing it, studies of terminally ill patients underscore one common desire: to be treated as live human beings until the moment they die.

Most also say they don’t want to be alone during their final days and moments. This means that caregivers should find out what kind of medical care the dying person wants administered or withheld and be sure that the medical personnel on duty are fitting in skill and temperament.

“Before health care decisions around end-of-life care can be delineated, clinicians and patients must first recognize when life-limiting conditions such as heart failure, lung disease or cancer are no longer responding to disease-modifying treatment,” Shega says. Next, he says, there should be “a conversation between the patient and clinician about end-of-life care and the role of hospice.” He adds that care teams need to provide ongoing support to the patient and their loved ones throughout their final days, “never abandoning the patient and respecting their choices.”

Favorite activities or objects can be as important as final medical care. Caregivers should ascertain the tangible and intangible things that would be most pleasing and comforting to the patient in the final days: favorite music or readings, a vase of flowers, a back rub or foot massage, being surrounded by loved ones in quiet or conversation.

Spirituality can help many people find strength and meaning during their final moments. Think about the patient’s preferred spiritual or religious teachings and underpinnings, since ensuring access to this can be especially soothing at the end of life.

Complete Article HERE!


What is the best way to explain death to a child?



The popularity of bestselling memoirs such as When Breath Becomes Air and The Bright Hour, both meditations on death by authors who died young, suggest that death is a topic many of us like to think about (while alone, reading silently) – yet, it is still a subject many of us are woefully bad at talking about, particularly when it comes to discussing it with kids.

We all need a better “death education,” says Dr. Kathy Kortes-Miller, an associate professor of social work at Ontario’s Lakehead University and author of the new book Talking About Death Won’t Kill You: The Essential Guide to End-of-Life Conversations. Like a new website launched last November by the Canadian Virtual Hospice, the book takes what remains a taboo subject and shows how to talk about it openly and honestly. The Globe and Mail’s Dave McGinn spoke to Kortes-Miller about having that conversation with children.

Why do we have such difficulty talking to children about death?

As parents we are cultured and conditioned to protect our children. Our generation, we didn’t really learn how to talk about it. Before I was a parent, I was really good at talking to children about dying and death. And then I became a parent myself and found that it was a lot harder than I thought it was.

What’s the risk of ignoring the subject, or not bringing it up unless they do?

It keeps it as an unknown and as a scary and almost a taboo topic. We [need to] recognize that this is a transition event in our life and one that we can prepare for and one that we can learn about, and by doing so, that’s going to help us to live life more fully and prepare ourselves for the end of life.

What is the best way to explain death to a child?

It depends on the age of the child, of course. But one of the ways to do it is by looking around at nature. Kids are inquisitive. They’re interested in how things die and what happens to them. So often they’ll see things in nature and ask questions. Those are really good ways to get the conversation started. As they get a little bit older they start to watch TV and they start to read books. There is a lot of dying and death in media that children are exposed to, and those are also really good conversation starters.

You mention that nature often presents an opportunity to talk about death. I’ve been guilty of telling my kids a dead squirrel they saw was just sleeping.

That’s an easy one to do. We’re almost scared to use the D words – dead, dying and death. But we confuse them if we use euphemisms. Having worked with young kids in a counselling role as a social worker in a hospice unit, when we talk about “oh, grandpa’s just gone for the big sleep,” instead of he’s died, kids get nightmares. Kids don’t want to go to bed at night because grandpa went to sleep and he didn’t wake up.

When a child wonders what death is, is there a good description of the physical process that won’t scare kids?

I would sometimes talk about it from a physiological perspective. The reality is that sometimes we get really, really sick or we get old and our body no longer functions the way we need it to, and as a result, some of the things such as our heart or our brain stop working, and as a result, our body dies. It stops working. And that’s kind of the way I would begin that conversation. I would leave it then on the young person to ask some questions, to see what they want to know more about.

You say in the book that bedtime can be a good time for these conversations. Why?

Bedtime can be great depending on the age of your child. Often, there are rituals and time spent at bed reading books and tucking in and doing all that stuff, which is a great time to have conversations. As children get older and we move in to more of what I call the chauffeuring ages, car-time conversations are really good too, particularly because the kids don’t have to make eye contact.

Is there a euphemism for death that you loathe most?

One that’s probably most common is the idea that people “pass away.” I talk about this story of Sam in the book when he got really confused because he was in school and in school they talk about passing to the next grade, and the only person he knew who had passed was his mom. So that one I think particularly for children is a big one.

Kids usually seem capable of processing much more than we give them credit for.

Yes. For sure.

Helping a child or teenager who is grieving the death of a parent or loved one is always difficult. What do you tell them? How do you help them understand matters? The Canadian Virtual Hospice recently launched a website, KidsGrief.ca, to help answer those questions. It is especially important to talk to young kids about the four C’s, says Andrea Warnick, a Toronto-based registered psychotherapist and co-lead on the project.

“The four C’s are four common concerns that kids have when either somebody’s seriously ill, dying or has died in their life. We’re really trying to encourage families to address these even if kids aren’t bringing them up,” she says.

  • Cause: Am I some way responsible? “A lot of parents are really surprised when they find out that their child has been thinking that they did something to cause the illness or death in their family,” Warnick says. She has worked with children who thought their mom got throat cancer from yelling at them to clean their rooms. “We really want families to let their kids know that this is not their fault, they did not cause this in any way,” she says.
  • Catch: “A lot of families will avoid the word of the actual illness. So as opposed to saying, ‘Daddy has cancer,’ or ‘Dad has ALS,’ they’ll say, ‘Daddy’s sick.’ And for kids whose reference for sickness is that it gets spread across the daycare, or one person gets the flu and then the next person does, that scares them and they often think it’s going to happen to them to or they can catch it,” Warnick says. You can still hug your dad, still kiss him. You can still cuddle.
  • Cure: You have to let your kids know they can’t cure it. “This is not in their control,” Warnick says. “A lot of kids will use the power of their imaginations to come up with pacts, promising a higher power that they will never fight with their mom again if they cure them, and then of course they fight. I’ve had a number of kids feeling very responsible that they did something that could have happened otherwise.”
  • Care: This is one of kids’ biggest fears. “If there’s a parent or a primary caregiver who is ill or dying, who is going to take care of me?” Warnick says. Or if the person has already died, is this going to happen to my other parent or whoever it is who is now taking care of them? “A lot of kids are really worried about that. And that’s where we really walk families through how to talk about that. Some families are tempted to say no, it won’t happen to me. And we can’t promise a child that. So we really encourage families to say: Most likely I’m going to live to be very old, but if anything does happen to me, this is who is going to take care of you. Hopefully, guardians are picked out. Let them know what the plan is.”

Complete Article HERE!


I Am Dying From Terminal Cancer.


Here’s What It’s Taught Me About Living.

Susan, with her hair mostly out from chemo, and her sons Oliver (left) and Nathan (right) at Nathan’s graduation from the National Circus School (background).

By Susan Briscoe

Sparkling bright and eight months pregnant, my French-speaking surgeon in Montreal, Quebec, was perhaps more direct than she would have been in her native language. She’d just removed my uterus and everything else that I could spare from my abdomen, but she was reporting on what she hadn’t been able to remove of the sarcoma that had, in just the weeks waiting for surgery, spread beyond hope in my belly.

“You will die of this,” she told me matter-of-factly.

Chemotherapy, she said, might give me a few more months if it worked, but those chances were small. So, I consider myself pretty fortunate to still be here a year later.

Pre-diagnosis, I had just turned 50 and was extremely fit, healthy and happy. Nobody could keep up with me! I was excited about life. It had occurred to me that, with my family’s excellent longevity genes — and some good luck — I might very well live another 50 years. I was enthused about the 30 years’ worth of creative activities and research projects that I had ambitiously sketched out for myself. Both my sons, also healthy, happy and on-track, had moved out on their own; and after more than 20 years of solo parenting, I was ready for a little more fun. Deeply aware of and grateful for all the privileges that made my wonderfully full life possible, I figured I had had more joy in life than most would ever have.

But I didn’t get the good luck part, so now I am going to die.

And that is okay.

That was the first thing I told my loved ones. My boyfriend. My parents. My two boys. “I have a very bad cancer. I’m not going to be around much longer. It’s okay.”

They looked so hard into my eyes, gripping my hands, tears streaming down their faces, as I told them this. When I got to the “okay” part, they nodded. They knew I meant it. I was okay. It was okay. They were going to be okay.

Susan getting chemo.

These conversations, especially the one with my boys, were the hardest I’ve ever had. The image of my sons sitting at my hospital bedside and simultaneously dropping to their knees in grief is seared into my mind. Yet these conversations were also the most beautiful I’ve ever had. Though it was terrible to bring them so much pain, I have never felt anything like the outpouring of love we shared in those moments. And it wasn’t long ― that same visit, in fact ― before we were also laughing.

So, one of the first things my diagnosis taught me was that, as much as my dying meant tremendous loss, it also meant receiving gifts of unimagined beauty and joy and love, not just for me, but for my loved ones too.

Many people I meet have imagined me in a state of pure devastation and distress at my diagnosis. Loss brings grief; and because grief is painful, like everyone else, I try to avoid it. But the flip side of grief is gratitude for having had whatever is lost to begin with. I have learned that, to a surprising degree, I have a choice about which side to focus on. I could be sad about all I won’t experience in life ― becoming a grandmother is one of the hardest for me ― or I can be grateful for all the gifts, like my wonderful boys, that I was given and fully appreciated. Choosing a state of gratitude has allowed me to remain happy and even joyous in this time. Yes, there is still grief, but the tears are fleeting, and lately rare.

The Death Project is a blog where I journal about my life with terminal cancer. I wanted people to know that dying doesn’t have to be as bad as we fear.

Talking and writing openly about it has enabled my loved ones and I to feel okay. (My son and a dear friend have contributed to my blog, while my boyfriend has a companion blog and has also written about our relationship for HuffPost.)

It is my hope that our writing will help others face death with less fear and anguish. I always want to say, “it’s not the end of the world!” — though, of course, it sort of is.

Humor has also been a huge help. “I can’t lose my mom and the X-Files in the same year!” my son said in mock despair after he was nearing the final episode of his favorite series on Netflix. His girlfriend was aghast, saying “Too soon!” But it wasn’t too soon for the rest of us.

Allowing ourselves to embrace and even delight in the absurdities of life that can bring anything at any moment has lightened our sadness. It’s also a way into difficult conversations. It’s been hard for my boyfriend to talk about his future without me, so I joke about him bringing a date to my funeral. We agree that he should not be swiping through Tinder during the service ― though it would be fun to compare results before and after his eulogy.

Being so open about my terminal diagnosis was easy for me partly because I was able to accept it immediately. And acceptance was possible because all my life I have been thinking about death and making peace with it instead of fearing it. Having to die when I am still full of vitality has never felt unfair to me. Nor is it a surprise. Death was always part of the deal. And I wanted to be ready whenever it came.

The essayist Michel de Montaigne tells of the skeleton guest at celebrations in ancient Egypt, reminding revelers that there is never a time when death cannot visit, invited or not. And I have heard of another people who keep their own caskets by the front door as a reminder of their own mortality. I like the idea of such memento mori, like a discarded tombstone I once brought home during my youth after visiting a graveyard. I can see now how coming to terms with mortality has been worthwhile not just for the chance moment of a dreaded diagnosis: death has also taught me important lessons about how to live.

Death has shown me that when I am living the life I am meant to live, I am giving. When I discovered I would die sooner rather than later, my most urgent concern was that I didn’t have long to give all I had to the world. On a practical level, this meant getting my affairs in order: a lot of work since my will needed updating. Amid that long and tedious process, I wondered how people managed to die suddenly. There was so much to do!

But giving is much more than a list of bequests. I have also given to society through my teaching job, volunteer work and charity. But most importantly, I continue to give of myself. In my personal relationships, this means my affection, my compassion, my friendship and my love. I’ve had to remind my boyfriend that just because I’m the one who’s sick doesn’t mean I can’t still take care of him at times. Since he is jealous of our cat, I try to favor him with the head rubs. I love to give a smile to strangers, knowing many will pass it on. I try not to give unwanted advice to my sons, but I keep failing. And they still won’t dress warmly! There are so many ways to give: a word of encouragement; a compliment; any act of kindness, however small or brief. I want to give as much as possible, and not just to my dear ones but to everyone, to the whole dear world that I have loved so much.

But giving sometimes triggers grief when I know these opportunities are coming to an end. Like the 4:30 a.m. ride to the airport that I offered my younger son when he was nervous about missing his flight for his first professional tour as a circus performer ― the last ride I figured I would ever be able to offer him. Turns out, he slept through the doorbell, through my texts and phone calls, and through his circus partner’s texts and calls. I ended up pounding on his door until I finally managed to rouse a roommate who let me in to find him still soundly sleeping. We both knew it was the last time I would be able to rescue him. Losing his mother means growing up faster than he might have otherwise (though we also both know that in less practical terms I will always be there for him). He’s going to be okay.

I am aware too that my giving will have to switch to receiving as my disease progresses. Learning to ask for and accept help has been the hardest challenge for me, accustomed to being the competent, independent caregiver myself. Trusting others to load the dishwasher properly is still a struggle! But I remind myself that giving others the opportunity to give is also a gift.

I know there can be no regret in a life lived giving in this way. Though I’m not particularly concerned about immortality, I can also see how it resides in this giving: much of what I have given will still be there in the world when I go. That is what lives on. And the most powerful of those gifts, the one that surely never dies, is love.

So how do I live while dying? Ideally, the same way I have lived my life.

Susan on her 50th birthday

Complete Article HERE!


Living like I’m dying


I’m leaning into death to see if I can change how I feel about it.


I imagine I’m not the only person who’s written their own obituary, but maybe I’m the first one to see it in print. Writing my obit was the first task in an exercise that came to an end yesterday.

“Brown, Laurie Jane. (October 7, 1957 – March 4, 2018). Laurie died suddenly yesterday in Toronto at age 60.”

I feel like Scrooge seeing his own gravestone.

I am in perfect health, but having recently turned 60 years old, I am feeling an increasing urgency about, well, everything. Why not give myself the deadline to end all deadlines? On Dec. 4, 2017, I decided I had three months to live. Three months to make more of whatever time I have left.

So for the past three months I have been thinking about death everyday. “Is this the last time I hand wash this sweater? Is this the last time I talk with my son?” It was jarring, but I kept going. I wanted to get to a less anxious feeling about my own mortality. By trying to live as if I was dying, would I live each day differently? Might that take some of the sting out of my impending death? Is that even possible?

The first thing anyone with three months to live is told to do is “get your affairs in order.” I updated my will and my living will. Next, I collected all my banking and legal information and printed it. (Kids – it’s in a bankers box on the floor of my closet, along with the full obituary.)

I started my death exercise without telling anyone. Good thing – I could have ruined a few dinner parties. I did let one girlfriend in on it and her response was “March is still too cold to stand by your grave. Can you make it May?”

With two months left on the calendar, I flipped between two very different states of mind. On a good day? I believe I’ve had a full life, a lucky life and I’m good to go right now. But on a bad day, it’s a different story: I want to be a grandmother, I want to create more, I want to grow old. My children need me and my new partner needs me. I couldn’t bear to contemplate the end of a love I had barely begun.

I never used to think about death until my mother died at 58 of ovarian cancer. I was terrified that would happen to me. Now, I scroll through my Facebook feed reading chemo updates and news of departed friends. I feel like death is hunting me and my senses are working overtime to hear the approach. I don’t want to live in fear – so I’m leaning into death to see if I can change that.

Each morning, I opened my eyes and thought of the day in front of me. I paid attention to the morning light through my window, the luxurious feel of my bed sheets, the realization that I had no pain, and I felt great. My feet hit the floor and I jumped into my day joyously. My mantra became ‘say yes until it breaks you.’ I was sounding like an inspirational poster, with kittens. And yet, I didn’t feel as if I was truly living each day like it was my last.

Too embarrassed to talk to people about what I was up to, I turned to books. Die Wise by Stephen Jenkinson struck a huge nerve.

Stephen has been witnessing death for decades, both as head of a palliative-care unit in Toronto and as a “grief whisperer,” helping the dying and their families navigate death. Stephen has no 10-step plan to a wise death but talking about it with him on Pondercast, my podcast, was such a relief.

When my mother lay sick and dying, I felt frozen and mute, and she was keeping what she felt to herself. Probably because I didn’t ask. I have terrible regret about that. I know I’m not alone in these feelings after a parent dies.

We live in a death-phobic culture. We don’t acknowledge dying people, we keep turning the conversation in the other direction, toward life and “keeping up the fight.” We institutionalize our terminally ill and our aged and we outsource the task of dealing with our dead. Illness and death are kept as far from the living as possible – it’s no wonder we are at a loss to find anyone to talk about it with.

In the same way that women have fought to take back the birth experience – bringing it home, surrounding birth with family and siblings, making it a human experience instead of a medical one – might we do the same thing with death?

I began to question my motives in taking on this three-month death exercise. It became clear that I was anxious to learn how to handle death. I wanted to bring order to the chaos of feelings I had. I thought I could learn to embrace death just enough to think I had it pegged.

My experiment is a pale shadow to the real thing. It doesn’t compare to the anxiety and fear felt by those who are truly ill. Nor what I once felt waiting for a biopsy report.

I can’t embrace death, death will embrace me. It will have its way with me. It will be messy and confusing. Death will ask everything of me. Will I be able to accept that? Is it too much to ask that that I might I leave my life loving it?

Perhaps the strangest outcome of this morbid exercise is realizing I have a moral obligation in my final days. Dying will be my last and perhaps most important act of parenting. I need to show my children how it’s done. That death carries with it a responsibility is helpful to me, it gives my death some purpose.

I have started awkward and halting conversations about death with my father, and have asked him to let me in. I want him to share his coming death with me. It will help me when my time comes.

Keeping death in the forefront of my mind is informing everything I’m doing. It’s a funny liminal place to be – but the balance of it feels right.

Laurie Brown lives in Toronto.

Complete Article HERE!


My mother’s peaceful death


The author’s parents enjoying their retirement in New Zealand, 1991.

By Jane Peterson

My mother’s last words were “It’s not working.” She slurred them before she fell into a deep sleep. Just prior to that, after ingesting medication mixed with applesauce, she had placed a plastic bag over her head and secured it. According to her meticulous research, this would hasten her passing.

Her death had been planned for months, if not years. Both my parents were members of The Voluntary Euthanasia Society in New Zealand, where they had retired from England to be close to my eldest sister and her children. Even though I had married an American and moved to rural Colorado, I was fortunate enough to be able to visit them every year and stay maybe two or three months.

Contemplating end of life

Our end-of-life discussions had been ongoing for many years, and both my parents were determined to die with dignity at a time of their choosing and before any needless and expensive medical procedures. Their wish was to pass away at home, as peacefully and as inexpensively as possible. As a family we agreed, with no hesitation. Now I pray that my sister and I can end our lives, legally, with the help of an enlightened physician, when quality of life is no longer an option.

My parents generally were in good health until my mother was diagnosed with rheumatoid arthritis at 82. This horrible disease was rampant on her side of the family—her beloved sister became ill in her 20s. She suffered mightily, without today’s wonder drugs that can alleviate some of the unpleasant symptoms, and died in her early 50s.

My mother had obtained a supply of Seconal from her doctor in London and had guarded her “stash,” with a mind to her eventual death. Despite the capsules being several years old, Mother did valuable research, including obtaining a prescription for anti-nausea pills, as well as taking six 10-mg Valium, with a glass of wine, before ingesting the lethal dose of Seconal. She had written separate goodbye notes to my father and to my sister and me. This was necessary to exonerate her family members in aiding and abetting her demise.

The final weeks of her life were filled with joy and laughter, and the planning took on a military aspect that my father, a lieutenant colonel in India during World War II, reluctantly took part in. I can honestly say that we had never laughed so much, despite the looming event that was ever present.

My mother’s pain was becoming increasingly unbearable and even sitting up in bed caused her appalling agony. The family doctor (they still made house calls in New Zealand) had given her Prednisone and Methotrexate. However, throughout her life, my mother had been unable to tolerate strong medications and she was terrified that the Prednisone was making her blind. The Methotrexate, on the other hand, messed with her mind. To our horror, a few weeks before, we found her lying outside in the driveway, in the pouring rain at 3 a.m., crying softly for help.

Goodness knows how long she had been there, and thank God I needed to use the bathroom in the middle of the night. When I checked her room and she was not in bed, I alerted my father. She was taken by ambulance to the nearest hospital and she remained there to be stabilized for a week.

Dying with dignity

Trying to keep on an even keel the morning of her death, I heard her speaking with my father who was asking her (again) if this was what she really wanted. I was cleaning up in the kitchen, and I am not ashamed to say that I lost it. I was privileged to have exceptional doctors in America and was prescribed suitable medication to help me through difficult times. This was definitely one of those occasions and I make apologies to no one.

Darling, darling Mother! So adamant that she could leave my sister and me as much money as she was able. She needed relief from her torture and, thanks to a long relationship with her family doctor in England, she was able to obtain it, in her own bed, surrounded by loving family. My sister and I monitored her pulse. It became weaker and weaker, until it was apparent that she had passed. The whole process took less than one hour.

It remains the most spiritual experience of my life, and I was similarly affected when my father died at home, just over a year later. Desolate after my mother’s death, he lost the will to live and had even asked my sister about getting a gun.

He passed away a week after being placed in a morphine-induced coma by his physician, so there was no verbal contact in his last days. Although he did not have to resort to my mother’s method, he succumbed to an illness that had no name since any diagnosis, advice or procedures that might have prolonged his life were adamantly refused. I suspect it was pancreatic cancer that prevailed.

He died around 11 a.m. on September 1, 1996, with me by his side, holding his hand and professing my love.

The right to make our own choices

As before, with my mother’s death, the funeral director who came to the house was incredibly disappointed when my sister and I firmly rejected his top of the line caskets. My parents always said that they wished to be cremated in matchboxes, a standing joke in our family for many years.

I give thanks every day for my parents’ decisions. My friends are coping with family members suffering from Alzheimer’s, dementia and worse. Their loved ones die in hospitals and nursing homes, lives needlessly prolonged. It results in loss of dignity, immeasurable suffering and devastating financial consequences.

I am so encouraged that more states have passed laws enabling physician-assisted dying (end-of-life options). To those of a similar persuasion, I urge you to become members of Compassion and Choices, based in Denver and available at 800-247-7421 or www.CompassionAndChoices.org. This progressive organization endorses Death With Dignity, and was instrumental in the Colorado voters passing the End-of-Life Options Act, now legalizing medical aid in dying. They continue their efforts in all states.

We should all be so fortunate to have the legal right to pass as we wish, and I say no state or federal agencies have any right to dictate how we make personal medical decisions.

Complete Article HERE!


A Better Way for Families to Care for Dying People


Rutgers palliative care expert Judy Barberio gives patients and their families strategies on how to ease the transition to end-of-life care

Although 70 percent of Americans die from chronic disease, most do not make their preferences for end of life care known to their families, leaving loved ones unprepared for their final days. Patients who wish to die at home and who can benefit from palliative or hospice care usually are referred too late – often in the last four weeks of life – to maintain comfort and quality of life and to better prepare for death.

The nation’s aging population is presenting new challenges to terminally ill patients and their loved ones, who must manage chronic pain, disability and questions over when to engage palliative or hospice care, and to health care providers who help them navigate the end stages of life.

To advocate for health care that maximizes quality of life and that minimizes unnecessary suffering in end-of-life care, Rutgers School of Nursing has partnered with Barnabas Health Hospice and the Visiting Nurse Association of Central Jersey Home Care and Hospice to educate nurses, physicians, social workers and other professionals on how to improve the end-of-life experience for patients and their families through the “Hope and Resilience at the End-of-Life” conference in New Brunswick on March 7 and 8.

Judy Barberio, associate clinical professor at Rutgers School of Nursing and one of the conference’s organizers, discusses some of the most pressing issues faced by terminally ill patients and their families.

How can palliative care and hospice improve the quality of life for the terminally ill and their families?

Palliative care assists a person who has been diagnosed with a life-limiting illness who might die within the next one to two years. It provides an additional layer of support and symptom management as the patient continues with disease-modifying treatment and provides bereavement support for families as well as addresses the patient’s physical, psychological, social and spiritual needs. Studies have shown that people who start palliative care early in the advanced stages of their illness can prolong their lives and have a better quality of life.

Hospice, which is engaged when disease-modifying treatment has ceased, is appropriate when the patient will most likely die within six months and the focus turns to making the patient comfortable and maintaining quality of life.

How can family members help a terminally ill person continue to live a full life with a chronic illness?

People don’t stop being who they are just because they are dying. They can still enjoy a full life by focusing on the small things that make a difference: wearing clothes they love, eating favorite foods, listening to music, reading books and spending time with friends and family.

Palliative care can help by supporting the patients’ family and friends, who often are grieving the illness and eventual loss of their loved one. The team can help family members come to terms with their confusing emotions and understand what the patient is going through. They also help with addressing pain and managing distressing symptoms as a patient goes through treatment and physical decline. They assist patients in expressing their decisions as to the kind of treatment they want at the end of life. They even can help patients live their dreams at a time when they need their dreams the most.

Can pain be controlled when you have a terminal illness?

Pain is one of the most frequent and feared symptoms in advanced disease. For many families, the last memory of their loved one may either be that of a “peaceful” and comfortable transition or that of a painful end. Most pain can be relieved or controlled. Effective pain control requires good communication among patients, caregivers and health care providers. Pain control plans are tailored to meet the patient’s particular needs and are adjusted as these needs change.

How can caregivers and family members combat “compassion fatigue?”

Compassion fatigue has been described as the “cost of caring” for others in emotional and physical pain. It is characterized by physical and emotional exhaustion and a pronounced change in the caregiver or family’s ability to feel empathy for the patient and can lead to depression and stress-related illness. Signs of compassion fatigue include feelings of exhaustion, reduced ability to feel sympathy or empathy, anger and irritability, increased use of alcohol or drugs, and impaired ability to make decisions and care for the patient. Once compassion fatigue sets in, a caregiver should receive assistance through a health care provider and counseling. Compassion fatigue counseling should screen for and treat depression and secondary traumatic stress as well as provide an early detection system to prevent relapse.

Self-care is the cornerstone of compassion fatigue prevention. Often family members or caregivers put their needs last and feel guilty taking extra time for themselves to engage in stress-reduction strategies, such as exercising, taking a long bath, sleeping well, meditating, doing yoga or getting a massage. It’s important for caregivers and family members to put their own health and wellness at the top of the priority list while caring for loved ones.

Complete Article HERE!