Can the end of life be an opportunity for social change?


Death and grief can nurture compassion, joy and solidarity, creating a revolution in the way we care for others.

death and social change

From the time I saw the film “My Girl” as a child in the early 1990s I had questions about the end of life. What happens when we die? What would it be like to live in a funeral home? How does it feel to lose a parent or a friend?

For obvious reasons I kept these questions to myself. Death wasn’t a topic that could be discussed as openly as what I learned in dance class that day. This was part self censorship and part socialization—I was never taught about death or dying in school (or any type of loss for that matter), so I never felt it was an appropriate topic for public conversation.  I kept these questions under wraps, until my mother was diagnosed with terminal cancer in 2013. She died three months later.

As a woman in her late twenties my questions became much more complex, replacing curiosity with fear and unfamiliarity. That’s the thing about the end of life: despite its universality, it can be sticky and complicated and imperfect.

My recollections of the last six weeks I spent with my mother are incredibly vivid. I can remember every hospital room we stayed in—the smell of her shampoo, our conversations and our disagreements. I remember the nurses who took the time to teach me about wound care and medication management and other gems such how to change the sheets with someone still in the bed. Laura and Kathy, the nurses who found our morbid sense of humour entertaining, were our favourites.

Having transitioned through intensive care and the surgical ward, back home, and eventually to a hospice, we spent over a thousand hours together adjusting to the cycles of the end of life.

When she no longer needed to eat or drink I learned that this was a normal part of dying, and that it was an act of love to resist the urge to encourage her. When she could no longer speak I learned that she could still feel and hear, and that we would need to change the way we communicated with one another. I learned to read her facial expressions for pain and discomfort.

Through caring for my mother I also learned to let go. After she died, I felt a loss of identity. I couldn’t quite re-orient myself as a motherless child, and felt like I had gotten lost in the natural order of things. I still feel this way sometimes when I remember that she’s gone.

To paraphrase mental health researcher Allan Kellehear, grief is a ‘forever thing’ and requires ‘forever strategies’—it’s not a matter of ‘returning to normal’ following a loss. Workplaces may offer a few bereavement days and friends may check in for the first few weeks, but the physical, psychological, emotional and spiritual costs of loss last a lifetime.

As part of my strategies for coping, I began to read personal memoirs about love and loss because it made me feel a sort of comforting solidarity to join the ranks of the bereaved. It also allowed me to become more settled in the reality of my own future mortality. And while I couldn’t change the grief I felt, I knew I could choose how to engage with it, spending many hours exploring the corridors of darkness and light.

I didn’t have a single, all-revealing ‘aha’ moment, but rather a series of insights which began to connect my own experience with the experience of others, and with the broader social, political, cultural and economic order of things. Part of my ‘forever strategy’ has been to look at the ways in which curiosity, compassion and conversation can transform the way we think about the end of life, and about caring for those who are dying.

The heart of the matter is that the universality of death and loss can be a source of connection and solidarity. We have an active role to play in supporting each other in times of grief and mourning, much like we rally together in times of celebration and social struggle. But for that to happen we must change how we think about elder care in fundamental ways.

As the population ages and global disparities in health and wealth continue to rise, we have an ever-greater responsibility to undertake those changes.Throughout the world, the number of people aged over 60 is expected to more than double from 841 million in 2013 to more than 2 billion in 2050. It’s also projected that the number of older people will surpass the number of children for the first time in 2047.

While increased longevity of life has obvious benefits, it also places more strains on health and social services that are already buckling under neoliberal ‘reforms’ which have shifted responsibility away from the state, and onto charities and ordinary people. This has a ripple effect in making it more difficult for families to fund care and take time away from paid work for care-giving responsibilities. Unfortunately, compassionate care benefits and employment insurance for caregivers are often inadequate, and may not be accessible to everyone in need.

Caring for someone with a life-limiting or life threatening illness can take up more time than a full-time job—up to 54 hours per week by some estimates. In my family both my brother and I left our jobs to be actively involved in my mother’s care. This is a decision that many would not have the luxury of making (nor should they have to). But if care could become a fully shared and supported experience these problems would at least be more manageable.

In fact, the emerging connections between social action and the universal experience of loss are already being made in a range of new and inventive mediums, programs and methods of end-of-life care. Many are rooted in Kellehear’s philosophy of “Compassionate Cities:”

“Compassionate end-of-life care approaches are partnership based and emphasise social interrelatedness. They presuppose the care of experiences of dying and loss within communities of people who understand and support one another. Compassionate Cities represent holistic approaches to end-of-life care. In this sense, they include formal healthcare services, but also extend the definition of care and create partnerships with a number of people and organisations in communities that offer skills which serve end-of-life care needs.”

In a conversation that’s still dominated by medical interests, a citizen-centred approach like this is a welcome departure, providing a springboard for collective action that allows communities to define their own unique challenges and solutions to end-of-life issues.

The Dying Matters coalition led by the National Council for Palliative Care is another great example. Comprised of almost 30,000 members across England and Wales, the coalition has successfully connected individuals and organizations from across the National Health Service, faith groups, academic researchers and the funeral sector to “help people talk more openly about dying, death and bereavement, and to make plans for the end of life.” By providing support and resources and engaging the community through awareness events and online forums, Dying Matters has established itself as a transformative presence in the field.

Death Cafe offers another opportunity for people to talk about dying. The concept is simple but powerful: an open space with no agenda in which attendees discuss anything they want pertaining to death and end-of-life care in coffee shops or other non-threatening venues. The Cafe uses a ‘social franchise’ model so that anyone can organize a conversation so long as they adhere to certain guidelines. Since the first Death Cafe there have been over 2,000 such events in countries from New Zealand to the USA.

Even campaigns about funeral poverty can be vehicles for positive change. Quaker Social Action, for example, has established the “Fair Funeral Campaign” to raise awareness about the increasing costs of funerals and to advocate for fairer policies and practices from the funeral industry.

The point of these examples is to show that death can be normalized within the cycles of life, removed from the clutches of commercial interests and the medical establishment, and returned to its place at the center of communities.

On the night my mother died, my brother Alexander and I were sitting in her bed in the hospice. The room was abuzz with a sort of soft electricity that we felt but couldn’t explain. Eventually her breathing slowed, and then it stopped, just as the needle lifted from her favourite Patsy Cline album. Neither of us moved for a long time. We just sat in the space that our mother had left behind.

When I called my husband, Pierre, around midnight to give him the news he said something that came out of left field considering his Irish Catholic upbringing. He started talking about physics and told me to remember that energy cannot be created or destroyed—only change its form.

It’s been nearly two years since my mother died and I’ve thought about that law every day. For me, whatever energy was left behind that night has been transformed into a conscious effort to talk about death and dying in a radically different way, on the off chance that it might encourage others to talk about it too. Loss and grief can nurture compassion, joy and connection, creating a revolution in the way we care for others.

Complete Article HERE!

Dollhouse Graves

By By Charlie Hintz

These grave markers are as sad as they are sweet. These dollhouses were built by grieving parents for their beloved daughters, complete with favorite toys and other significant items. Though they are plagued by vandalism through the years, they continue to be kept up and restored when need be.

Dorothy Marie Harvey (1926-1931)

Dorothy Marie Harvey and her family were passing through Medina, Tennessee on their way North to find work. When Dorothy got measles and died, the townfolk helped her family bury her in Hope Hill Cemetery.

Her parents left her behind and continued on.

Vivian Mae Allison (1894-1899)

The dollhouse of Vivian Mae Allison is located in the Connersville City Cemetery in Connersville, Indiana.

Lova Cline (1902-1908)

Lova Cline’s dollhouse memorial is in the Arlington East Hill Cemetery in Arlington, Indiana.

Nadine Earles (1929-1933)

The grave of Nadine Earles is in the Oakwood Cemetery in Lanett, Alabama.

The story goes that Nadine wanted a dollhouse for Christmas. Since she died just before the holiday, her parents built her a dollhouse on her grave and filled it with her toys and personal belongings.

Complete Article HERE!

Planning for end-of-life care


speak up

When it comes to planning for end-of-life health care, the first impulse for many people is to avoid the topic. End of life is something many of us would prefer not to think about. But considering your wishes, and documenting them, is one of the most important things you can do.

That’s partly because we all have a different idea of what constitutes the best amount and type of care, and where we want to receive that care. For example, my idea of a good death is one that is not preceded by too many intensive medical interventions. I am influenced in that decision by my work as a doctor, and by my extensive experience with elder care.

Others may want the option of more procedures. Some people want to die at home if possible, while others are comfortable with hospital or hospice care outside the home. People make these decisions based on many factors, including their own desires and beliefs about death, what they think will be easiest for their loved ones, financial circumstances and religious beliefs.

Unfortunately, far too many people don’t make these decisions at all — not even informally. They don’t share their wishes with loved ones. According to The Conversation Project, an organization dedicated to helping people talk about end-of-life care, 90 percent of people say that talking to their loved ones about end-of-life care is important, but only 27 percent have actually done so. As a result, family members often must make multiple health decisions for their seriously ill loved ones without guidance. My husband and I are both doctors, and we’ve seen elderly people — who are unable to make their own decisions — undergo significant, invasive procedures because whoever has control over their health care can’t accept that their loved one is dying, or they fear making the wrong decision.

To avoid such an outcome, I strongly recommend that you make decisions now — whatever your age — and put them in writing in the form of advance directives. These are legal documents that outline your wishes for end-of-life care. Make sure to discuss your wishes with your loved ones and your doctor.


The term “advance directives” refers to three documents that can help make your end-of-life choices clear and legally actionable.

1. Durable Medical Power of Attorney for Health Care: This gives someone of your choosing the power to make medical decisions for you if you are too sick to make them yourself. This person must be over age 18 and available and willing to act on your behalf in healthcare-related matters. It is important to have end-of life conversations with this person. (A durable power of attorney for finances is a separate document and can be given to the same or a different person).

2. Living Will or Directive to Physicians: This document states a person’s decision to refuse life-sustaining medical treatment if that person has a terminal illness or injury that leaves him or her permanently unconscious. The directive lets your doctors withhold or stop life-sustaining treatment. Living wills do not apply when medical conditions are not life-threatening. Living wills tend to be very simple, which can limit their usefulness in complicated medical situations.

3. The Washington State Physician Orders for Life Sustaining Treatment (POLST) form is important for residents of Washington state who have an advanced, life-limiting illness and want to limit health care interventions. It’s usually supplied by your medical provider and completed during an office visit. You and your doctor, nurse practitioner, or physician-assistant-certified must sign the document after making specific choices about cardiac resuscitation, respiratory support, use of antibiotics and use of artificially-provided nutrition. The form then constitutes medical orders that guide your medical team in life and death situations. It becomes effective immediately, but if you change your mind about the decisions you’ve made, you can tear it up and it is no longer legal. If you live at home, post this form where paramedics can find it easily such as on the front of the refrigerator, back of the bedroom door, on a bedside table or in a medicine cabinet.

I’ve spoken with patients about why they put off creating these documents. Most often, they simply haven’t set aside time. Sometimes, they fear that signing them means they won’t get treatment when they want it. This is not true. If you state that your goal is to live as long as possible, you will get every intervention. People also worry that if they give someone durable power of attorney for health care, they will immediately lose control of their choices. But this power of attorney only activates if you are unable to speak for yourself. In reality, you lose control when you don’t express your wishes and leave all the decisions to others.

I was recently caring for an elderly patient with a new diagnosis of cancer. I looked back over several years of office visits and saw that we had had three conversations on the topic of advanced directives but he was never ready to make those decisions. I knew my patient could become very ill in the weeks ahead, so we started the conversation anew. We completed the POLST form, and he and his son agreed that they would complete the other documents that week. It felt good to have an honest conversation about my patient’s fears and desires, and to know that his son and medical providers will be able to honor his wishes.

I believe that most people in this country don’t end their lives in the way they would choose. That situation could be very different if we all take the time to share our preferences with our doctors and the important people in our lives.


Most people aren’t aware of the options for end-of-life care. These resources are helpful in beginning a conversation and making choices.

The Conversation Project has a free starter kit, downloadable from its website, that can help you gather your thoughts and consider how best to have this conversation with loved ones. Find it at

The Washington State Medical Association’s “Know Your Choices, Ask Your Doctor” campaign can provide both forms and guidance. Go to or call 1-800-552-0612.

The American Bar Association offers a starter kit for talking about these issues. Go to and enter “Consumer Tool Kit for Health Care Advance Planning” in the search box.

Hospice of Kitsap County offers a Living Will resource called Five Wishes. Order copies at

Your doctor’s office is also an excellent place to ask for more information about advance directives.

Complete Article HERE!

My Dog’s Activity Tracker Is Letting Me Watch Her Die



I’M HOLDING A thick wad of paper towels against my dog’s hip, shushing her and patting her head. I’m fairly timid at first, worried that pressing against her burst cyst could hurt her. But instead of yelping, she just stares at me with pleading “pet me more” eyes and settles her chin against my free hand. I gently, and then more firmly, push into the spot of wet, matted fur where it seems one of her various growths has burst. The liquid isn’t pussy or filmy. It’s just clear, like water. But it’s the third time in as many days that I’ve found her with a soaked spot, sort of moping around while it leaks. I’m just hoping it’s not urine, because that would mean the end is nearer than I want it to be.

Meanwhile, the canine fitness tracker she’s wearing—a coin-sized silver disc that attaches to her collar—reports everything is going great. This can’t be great, right?

I’ve been living away from Gypsy (that is to say, out of my parents’ home) for 10 years now. But when I moved abroad I decided: I need to be able to know as much about my pup as possible, even in my absence. Second-hand reports weren’t enough. So, I decided to strap an activity reader to her and watch the cold, hard data pour in.

I know that everyone says they love their dog, but I really love my dog. My family adopted Gypsy (also known as Roo, Roo Roo, Ooo Roo, Jibba, or Jibba Jabba) when I was in high school—my mom shocked us all when she brought home an intensely affectionate Border Collie-Australian Shepherd mix who was terrified of fireworks and bicycles and loved ice cubes. She is, to be totally honest, the best dog.


When I went to college, I lived close enough that I could see Gypsy every few months. After graduation, I moved a mere 45 minutes away and saw my dog even more often. But life got busier: My parents didn’t bring her on trips to see me (she was getting older, getting into the car became more difficult), and I didn’t have as much time to drive home. When I moved to Seattle, about four and a half hours away, I saw her even less. And then, when I moved to the Caribbean, it hit me: Gypsy might die while I’m gone. I might not get a call, telling me to come say goodbye, because it would be impossible.

I was home a few months ago, visiting my family—and my dog. She’s always had the manic energy of her breed, coupled with an endearing sweetness; she’s seemed like a puppy since the day she came home. But I finally noticed it: She had cysts, her fur was getting matted more easily. Her eyes were a little cloudier and didn’t follow you as well. Her back legs struggled to push her up on the hardwood floors; she would slide a bit, sometimes fall down. She definitely couldn’t sprint like she used to anymore. She was old.

That’s when I decided that if I couldn’t be around physically for Gypsy’s last months, I would be around digitally. I figured if I couldn’t actually be with her, I would use technology to… “be” with her. So I got a Fitbit for my dog.

Not actually a Fitbit, but a Whistle, a $99 canine activity tracker which you often hear described by people who own one as “the Fitbit for dogs.” Whistle has a motion sensor and a GPS sensor, so you can see how much exercise and rest your dog is getting. You can include additional info, like how much she’s eating. Within the app, you can attach photos you’ve taken.

activity appAt first, it was fun—adorable, even! I could see how active and playful Gypsy was compared to other dogs similar to her. I could see when she was out on a walk, and how much sleep she was getting. Whistle told me that she had an 82 percent success rate of hitting her goals (75 out of 91 days) and her best streak for doing so was a whopping 20 days. In fact, she’s better at meeting her activity goals than most dogs like her, so says Whistle. (She would get an average of 84 minutes of activity a day—similar dogs apparently get around 59.)

I watched from abroad as Gypsy hit her daily quota for activity and zipped past her exercise requirements. I noted to myself that it seemed like she wasn’t getting as much sleep as a dog her age and size should (a stat Whistle helps calculate), but hey, too little sleep was surely a sign she was more energetic and less lethargic! A good thing! Each evening, an alert would roll in, “Gypsy hit her goal!” and I felt soothed, comforted: She was old, but was doing fine.

As it turns out, she was only sort of “technically” doing fine. After moving back to the U.S., I made a trip to visit to my parents. While there, I would get Whistle alerts while sitting in the same room as Roo. Her activity report rolls in while I listen to her pant for no reason, or I get her sleep status while her paws struggle against the hardwood floors.

It’s not that Whistle is inaccurate—hardly. It’s just that when you’re not there, actually seeing your dog, the reports don’t spell out the entirety of what’s happening. Sure, she still meets her activity goals, but Whistle doesn’t record how she slipped on a stair. I can see that she’s still eating her dinner, which is fantastic, but the device can’t show me how confused and panicked she seems when she wakes up—all very obvious differences now that, despite her relative health, are startling. I was somewhat lured into thinking everything was fine, that I would come home to my dog, the ageless wonder. Because on paper (or, screen, rather), that’s what I’d convinced myself she was.

To be honest though, when I jump out and ignore the day-to-day reports and look at Whistle’s overall data, I activity app2can see the decline—which is such a strange thing to see defined in an app. Usually, these sorts of services are about living better: We want to lose weight or monitor our heart rates, and Fitbits, Fuelbands, and Apple Watches give us shiny charts and graphs so we can analyze ourselves and do so. But what about when a tracker isn’t showing that you’re getting better—what if it says you’re getting worse? If someone were to wear one of these things forever, they’d notice a change from improving their body to watching it die.

Now, I get nervous that I’ll see her activity plummet—maybe stop completely. That I’ll have a chart that shows me the moment she gave up, or even the moment she died.

Yesterday, we took Gypsy back to the vet to inspect her cysts. The vet told us, though, that it looks like there’s a lot of urine in her fur, too—and that she’s becoming incontinent. Which means, of course, that her health is worse than we thought. I went and bought pads to put underneath her beds, gave her a thorough bath, and took her for a walk. And despite the vet’s warning, she tugged at the leash, wanting to go faster, jumping back and forth (albeit it a little feebly) like a dog half her age.


I’m about to leave and move away again. I know it’s even more possible I won’t see Roo after this. So I figured it’s time to decide: Do I leave the Whistle on and continue to track her health, even if that means being able to zoom out on the data and literally watch her die? Even though it’s scary and sad (because you know, death is scary and sad), I want to. When I can’t physically be there to pet her while she falls asleep or take her for a walk, I can log in and see she’s resting, or that she just had a particularly active ten minutes.

I know no amount of trackers and technology will keep her alive, but those push notifications remain a comfort. Every time Gypsy meets her activity goal, that alert says that even though she’s old and even though she’s probably dying, she’s still my dog and she’s still out there, living as much and as best as she can. The reality isn’t as easy to parse as a few colorful pixels—she has good days and bad days, sometimes it’s clear she’s struggling and other times she acts like she’ll live another ten years. The tiny window Whistle gives me isn’t the whole story, but it’s a little piece of it, and if I’m going to be gone for the end of Gypsy’s story, then I’ll take whatever part of it I can.

Complete Article HERE!

Hump Day Humor – 07/15/15

Humor takes the sting away; it humanizes us; it helps us keep our perspective. Humor enriches us; it educates us; it brings us joy. Humor doesn’t dissolve the pain or make our life any less poignant, but it does help make things more bearable. That’s my philosophy, and I’m happy to share it with you on a weekly basis. I hope that if you enjoy what you see, you will take the opportunity to share it with others.

concert still in progress

days are numbered

did not

don't have a cole

Officials: Connecticut is most expensive place to die in US

Expensive To Die

Celebrities and business tycoons with multimillion-dollar estates in Connecticut are getting some unwelcome news: Their state has become the most expensive place to die in the U.S. because of hefty new fees for settling estates, according to state officials.

In fact, probate officials are warning that some invoices they will be sending out shortly could top $100,000 or even $1 million in a few cases, when the maximum fee in the past was $12,500.

The fees took effect July 1 as part of the new state budget approved by Democratic Gov. Dannel P. Malloy and the Democrat-controlled legislature. They’re also retroactive to all deaths dating back to Jan. 1.

The budget cut all state government funding to the probate court system, a total of $32 million over two years. To make up for the loss of that money, Malloy and lawmakers eliminated the $12,500 cap on probate court fees and doubled the fee on estates worth more than $2 million to 0.5 percent of the value. They also increased fees for most probate court filings from $150 to $225.

“It’s outrageous,” said Westport attorney Amy Day. “We always had a cap on probate fees of $12,500. Now it’s not going to be unusual for people to pay upward of $50,000.”

The probate court system surveyed all 50 states and determined that the 0.5 percent fee on the value of estates of at least $2 million was the highest in the country, surpassing the 0.4 percent fee charged by both New Jersey and North Carolina, said Vincent Russo, a spokesman for the state probate court system. New Jersey also has no cap on probate fees, while North Carolina has a maximum fee of $6,000, he said.

Russo said many states don’t charge fees based on total estate value. He said it was difficult to determine which states have the least expensive probate costs because of differences in law and policy.

The very wealthy often protect their assets by forming trusts, which helps them avoid some probate costs.

Connecticut also has an estate tax on all estates worth more than $2 million, with rates ranging from 7.2 percent to 12 percent.

Malloy spokesman Devon Puglia said Tuesday that the probate fee increases were among difficult budget decisions that had to be made this year.

Judge Paul Knierim, Connecticut’s probate court administrator, said if the new fees were applied last year, two estates worth more than $200 million apiece would have paid more than $1 million in probate costs and about a dozen worth over $20 million would have paid more than $100,000.

“I think the fundamental problem is that the change in decedents’ estate fees imposes the burden of running the probate court system on a very small portion of the population,” Knierim said.

Knierim and some state lawmakers say they plan to urge the General Assembly next year to dump the new fees and go back to the old system.

Vincent Carissimi, a Philadelphia lawyer who is executor of his uncle’s estate in Westport, Connecticut, said the new fees will increase probate costs for the estate by about $2,000, bringing the total to over $8,000.

“You usually expect to pay a nominal or moderate fee but you don’t expect to get soaked,” Carissimi said. “The most surprising thing is it’s a function of the funding being cut. That doesn’t make a whole lot of sense to me. I’ve never heard a state not providing funding to its courts.”
Complete Article HERE!

Life is but a dream – 07/14/15

What does “life is but a dream” mean?

Sometimes when something unbelievable happens, it’s so outrageous (usually in a good way) that it seems like you’re in a dream.

Life is what you make of it. So if you dare to dream, envision what you want it to be – it becomes your reality. It goes right along with the saying “You can be anything you want to be…”

In dreams anything is possible, impossible becomes possible. In life there are limitations with unseen forces that work along with our motives to confuse us more on the path to fulfillment. Life is but a dream – nothing is so easy as to dream it and make it happen right that moment without obstacles standing in way.