You can’t quite find the right words?

Photo by Aamir Suhail on Unsplash

RECOMMENDATION

Someone you know has just lost a spouse, a parent, a child? A friend is going through a difficult divorce? Perhaps you know a family member of one of the 550,000+ Americans who have died of Covid-19 since the pandemic upended our lives?

You need this book.

Dana Lacy Amarisa, who spent decades as a marketing writer in the tech world, was long  empathetic with fellow humans in all of the above categories. As it happened, in those same years she suffered unimaginable losses herself. It was definitely the hard way to learn, and the long way to edit and rewrite; but Amarisa has just released a book that answers the stumbling- block question encountered by 99% of those listed above: “I just don’t know what to say . . .”

Amarisa’s little book – it measures four by six inches and is less than a half-inch thick – is titled Condolences Pocket Guide: What to Say and Not to Say to Grievers. Most of us have, at some point in time, managed to say the abominably wrong thing, or – worse – stayed silently absent because we didn’t know the right words. Now there is a guide to fixing that problem forever.

In spare language throughout the book Amarisa mentions her own losses. An infant daughter. Amarisa’s father’s death soon afterward. An eight-month-old son later lost. Divorce. Emergency surgery and a broken hand. Those experiences first taught her about the pain that can be inflicted by the wrong words, or by silence, as well as the comfort that the right responses can bring.

But Amarisa puts herself in our shoes and walks along. “Using pat condolences,” she writes, “is like trying to put out a house fire with a squirt gun. And grievers resent us when we do this.” Or – “Grievers need our heart. Unfortunately, most common condolences give grievers our mind instead.” Snippets of very good advice begin the short chapters in these ways. “Don’t push, insist or advise. Let them tell you what they need, and let that be enough.”

Condolences Pocket Guide manages to avoid the pitfalls of many “advice” books (the genre doesn’t quite apply) in never getting preachy or cloying or accusatory, or going in all those other directions that can quickly turn us off. Instead, it sticks closely to specific, recognizable situations and speaks without inflection. To help you avoid missing the point it also features thumbs-up or thumbs-down graphic illustrations throughout.

Amarisa covers the spectrum of grievers and condolers: what to say (and not to say) to kids, to casual acquaintances you run across in public, to someone whose loss is many months past. Ensuring its accuracy, Condolences Pocket Guide was written “In consultation with Dr. Alan Karbelnig, PhD Psychology and Dr. Carlos Bush, MD Psychiatry.”

It may be the collective grief we have all experienced since the pandemic hit. Or it may be having had one president utterly unable to express empathy followed by another president exquisitely adept in reaching into the hearts of his fellow humans. For whatever reason, it seems unlikely that anyone today wouldn’t identify with at least a few of the situations addressed in this compact little guide. But grieving and potential responses have been a dilemma since about the time civilization started trying to be “civil.”    

In 2003 this writer published an essay on Beliefnet.com – then in its early days as a nonsectarian spirituality website – titled But I don’t know what to say. I remember being fairly pleased with it (I am easily pleased, especially if it’s something I wrote) although a copy does not seem to have survived. Subsequently I sent my agent a carefully crafted proposal for a 10-chapter, 60,000-word book on interacting with those who’ve suffered losses. The outline and proposal for that tome do remain in my files, along with a brief agent-client correspondence littered with phrases like “marketability” and “limited audience appeal.” I will look back on this as having been ahead of my time (the kindest way I have of looking back.) But I am now happily shredding the whole folder.

Dana Lacy Amarisa has said it all in 74 small pages.    

This essay appeared earlier on Medium.com

Staring into the Great Beyond

Greg Rakozy on Unsplash

Since this space is often devoted to end-of-life issues, today’s essay is offered as a new and unique perspective. And in case you need a laugh. It was written by my old and definitely unique friend Bob Dodge, a fellow supporter of End of Life Choices California. Asked for identifying bio he replied only that “the author had become delusional and cynical while standing in a local Bed, Bath & Beyond. He grants no interviews and wants to avoid being crushed by requests for TV appearances, magazine articles and the like – BUT – PBS or NPR requests will be considered. Meanwhile – – – ENJOY LIFE.”

I have never thought much about the name of the chain of stores named Bed, Bath & Beyond, thinking as most would, one can find items for furnishing different rooms of one’s home or apartment. Trash cans, wash cloths, hampers, rubber thingamabobs for shower, kitchen or bathroom and now electronic security gadgets for monitoring your goldfish, pets and the creatures, like raccoons and skunks outside near your car and front door. I really don’t mind going to these stores once in a while to browse through the isles searching for an unusual item to ponder on as to why people might want to buy such an item. But, I guess they do buy them else the store would have swept them off the shelves and replaced them with something else also so bizarre that nobody wants or really needs.

Today, Friday, I had a revolutionary experience at a Bed, Bath & Beyond in Redwood City that changed my perspective of this commercial outlet and I may return on my own free will! Let me set the scene: Mary was looking for some new items for our master bathroom, like a new rug with matching hand-towels and face-cloths and a new squeegee for the shower glass. Also on her list were new pillows, none of which interested me given I tend not to notice if the rug and towels match, the shower glass is streaked or that the pillow is sweat-stained since I prefer sleeping with my eyes closed and therefore don’t see what my head is resting on. Just knowing the pillowcase is clean is what matters most to me.

Anyway while Mary is off down one of the aisles, I am standing there, masked as usual these days, gazing at the RING displays of electronic security items, trying to figure out what all the displayed gadgets do. This display is near the check-out counters and as I am standing there a voice calls out asking, “Are you ready to check out, sir?” I look up to see a young, maybe twentyish, masked female staring at me. “No, I am not ready to check out, thank you very much,” I replied. And then it dawned on me… The BEYOND part!! NO! I am not ready to check out. Come on, I am only 83 years and 10 months old and doing pretty well thank you very much! I really didn’t think I looked so bad physically that I would attract attention! I had not realized that End-of-Life issues had advanced this far and into retail establishments no less! Imagine asking potential customers if they are ready to “check out” right there in front of other customers. I would think the process would be kept a little more private. I kind of had the same reaction when I went to buy condoms for the first time in a pharmacy. “I need to buy a package of prophylactics, please”. Pharmacist: WHAT? “Oh, CONDOMS! WHAT BRAND AND WHAT COLOR?” he seemed to shout to the few others in the store. But at B,B & BEYOND it seems to be out in the open and maybe that is good for the movement.

Another thought about choices at the end of one’s life. I think there should be a hotel chain with a name something like SWEET DREAMS or THE LAST GOODBYE or maybe CHECKING IN BUT NEVER OUT Hotel. Senior citizens could pack a simple overnight bag of a few items like a small toothpaste tube, hair brush, old and well used toothbrush and a favorite pair of jammies. Then they tell the hotel clerk, “Checking in to check out”, simple as that. And they check in with confidence knowing that when check out time comes the next day there will be no line to stand in. Fait accompli. 

This essay appeared earlier on Medium.com

Partnering for Today and Tomorrow

crop diverse colleagues stacking hands together during training in office
Photo by Andrea Piacquadio on Pexels.com

Got a partner? Partnering is alive and well, and might still save us all.

Not just the individual partner (lovely construct though that is, and I miss mine!) but partnering on the local, national and global level. What’s heart-warming to see are the innovative ways being discovered for partnering while apart.

Hopefully we’ll be able to revive this at the international level. While America-First-ing for the past three years we’ve pretty much eliminated every partnership that was helping us fight climate change, slow the threat of nuclear destruction, protect the planet’s air and water, little things like that. But may we please not totally un-partner ourselves from the W.H.O. and everyone around the globe working to find COVID-19 therapies or vaccines?

But on the upside! Other partnerships are thriving, innovating and saving lives. My friends Terry and Rich, for example – she’s an artist/printer, he’s a retired physician – are partnering with nonprofits which, in turn, partner with restaurants and food sources, and together (while apart) they are cooking, serving, delivering and feeding hordes of isolated or homeless souls across San Francisco. All over America kids and young people are partnering with faith communities that partner with other nonprofits to shop, run errands and otherwise help homebound seniors. The abounding stories of generosity in partnership can get you through the darkest times.

And even for us homebound/quarantined seniors – probably the last who will be sprung free as things open up – there are new and interesting ways to partner with those on the outside world. If you’ve not already met my favorite current partner, may I introduce you to End of Life Choices California. EOLCCA has, from its beginning, partnered with individuals facing the end of their own lives and considering using the California End of Life Option Act. I’m privileged to have worked as a volunteer in this field for the past several decades, most recently with EOLCCA. Supporting someone who is dying, easing that transition however you can, is a fairly straightforward (and immensely rewarding) task. But when you can’t be there to hold someone’s hand? A remarkable EOLCCA management team quickly perfected a system using communications technology to connect key personnel, critical data and the individual volunteer in order to walk dying individuals and their loved ones through an intricately difficult time. I’ve not done this yet, but reports on early cases are uniformly optimistic and encouraging.

Here’s the bottom line: We’re better off partnered. Even when six feet apart, and hopefully back with our arms around each other one day.  Not “first” or best, solo macho or going-it-alone. Partnered.

# # #

This essay appeared earlier on Medium.com, a good site for information and ideas that I’ve been writing for in recent months. You might want to check it out. (But my Medium thoughts will also continue to appear on this page. Thanks for visiting!

Cycles of Living and Dying . . .

Sebastian entered the world eight weeks ahead of schedule, weighing all of two pounds. His lineage is Korean/African American/German, which may offer an insight into how determined, individualistic and utterly beautiful he is. He had emerged from NICU (the neonatal unit at Kaiser) and gotten his fighting weight up to nearly six pounds when he first came to visit my husband Bud.

Bud w Sebastian 1.3.19
Sebastian (unimpressed) meets his honorary grandfather

That was about mid-January. In early February, about the 11th, Bud’s congestive heart failure of many decades took a sudden downward turn, and by Valentine’s Day he was in his last hours of life on this planet. Sebastian came to visit – well, he brought his parents too, but they are not central to this story.

His mom plunked Sebastian onto Bud’s chest, as he lay breathing heavily on his hospital bed, red balloons snagged from the downstairs dining room floating around. The last deliberate movement I can associate with my husband as he died was his left arm making a sort-of patting gesture toward the tiny pajama-clad bundle of new life on his chest.

We should all sign up for this: old life ending as new life begins. Seeing life as a natural continuum might not make much difference as we enter, but it could help us take more control of our exit – simply by confronting the fact that we will indeed exit. I like to think that my husband’s last moments were somehow heartened by the certainty that life does, and will, go on.

Bud was fortunate in other ways. Having reached his 90th year, he had been vocal about his readiness to die and had expressed his wishes clearly in writing. There are many good options now: hospice or palliative care, enforceable documents like DNRs and POLST forms (Do Not Resuscitate, Physicians Order for Life Sustaining Treatment,) etc. POLST formAnd in a growing number of states there is a right to confront mortality by hastening one’s dying. In California where I live there is the End of Life Option Act which gives terminally ill, mentally competent adults the right to ask their physician for life-ending medication. For many, that is a way to meet life’s end with extraordinary peace.

A relatively new organization, End of Life Choices CA, is part of this continuum, this big picture of Birth/Life/Death/Peace. EOLCCA provides information and personal support re  California’s End of Life Option Act and all other legal end of life options. It is among several nonprofits dealing with critical aspects of end-of-life care – and helping us all see more clearly that death, like birth, is a universal experience.

When training, recently, to be an EOLCCA volunteer I met a remarkable fellow volunteer named Lori Goldwyn, who may understand both ends of this continuum as well as anyone around. After earning an M.S. degree in Education and working in women’s health for several years, Lori had a homebirth 30 years ago that led her to become a childbirth educator and labor doula. “I came to believe in the value of supporting the natural process as much as possible,” she says, “for both the mother’s and her baby’s sake. A woman in labor contends not only with the pain of labor,” Lori adds, “but with the intensity of realizing that there’s no way out. She can’t escape, quit or divorce this one. The only way out – as is true with the rest of life – is through.”

Eventually the link between natural birth and natural death became clear. “While being with my mother in an inpatient hospice in 2010,” Lori says, “I was struck by the similarities between the birthing and dying experiences.” That epiphany led to her working in hospice and palliative care, as an End of Life Doula, and now also as a volunteer with EOLCCA. Her website, Comings and Goings, reasserts the validity of this continuum with this subtitle about Doulas: Caregivers to those on the threshold points of our Earthly existence.Moon & clouds

“When we get that terminal prognosis, or as we lie dying,” Lori says, “there’s no escaping this reality, this ultimate inevitability.” She quotes the Italian director Federico Fellini: “All we can do is try to become aware that we are part of this unfathomable mystery. We are a mystery among mysteries.”

As he grows, I think Sebastian will also understand this mystery, this continuum, as well as anyone. Sebastian started off in a softly-lit incubator watched over by his mother, a nurse. Weeks later, his honorary grandfather was leaving the planet. And they were able to trade greetings on their journeys.

 

 

How Not to Die in the E.R.

Doctors and nurses pulling hospital trolley,“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”

My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.

In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”

“That is not what I want,” said my husband, looking her in the eye.

“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”Martini

So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.

“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.

“Do not call 911,” I said.

“We understand,” they said. “We love him too. But we have to call 911.”

The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.

“You may not take him out of this apartment,” said I.

It became an interesting battle.

“We understand,” they said. “We agree with you, ma’am. But we have protocols.”

Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician  (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”

Fran & Bud 5.28.18
The two of us

One of the paramedics saluted my husband as he left the bedroom.

My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.

Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.

What’s wrong with this picture? Only the caption.

The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.

Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.Heart

Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.

 

Death, Dying and a Few Questions

Third & final report on a few highlights of the global conference ‘The End of Life Experience: Dying, Death & Culture in the 21st Century’ in Lisbon, March 2018

Question markWhat are the tough end-of-life questions facing the people of Australia? Pretty much the same as those facing the people of the U.S. Or the U.K., or Canada, or Portugal. A few of those discussed at the recent End of Life Experience interdisciplinary conference in Lisbon would include:

How, exactly, do we define death after all? Iona College Professor Vincent Maher, who holds a variety of degrees and whose career has included broad based legal, health care and non-profit sector experiences, presented a paper on the complex case of Jahi McMath. McMath was declared brain dead following surgery to correct a sleep apnea condition at Children’s Hospital, Oakland CA in 2013. She was 13 years old. Her family refused to accept the declaration of death and insisted she be kept on a ventilator. “Court interventions, news and social media exposure ensued,” Maher explains. “Fingers were pointed. What should have been a difficult but straightforward medical decision became a management, ethical and legal fiasco.” Eventually the family succeeded in having Jahi flown to New Jersey, one of two states (New York being the other) which follow a family’s definition of death. This policy was designed to accommodate Orthodox Jews, some of whom believe that the presence of breath signifies life. Jahi remains on a ventilator and feeding tube, with 24-hour care covered by Medicaid; her family still hopes to bring her back to California – where the coroner issued her death certificate in 2014.Grim reaper

Set aside the ethical, racial (McMath is African American,) financial and other questions, what is death? When the heart stops? When breathing stops? Or when the brain is dead? Medical technology can now keep a body functioning after brain death – organ donation is benefiting from this – but at some point, death takes over.

Can we keep control of our lives as they are ending? Increasingly, no, says Dr. Peter Saul, Senior Specialist, Intensive Care Unit, Calvary Mater Newcastle, NSW, Australia. “Dying in the 21st century in a wealthy country,” Saul says, “is now dominated by elderly people with significant disability, sometimes cognitively impaired, faced with making complex end of life care choices.” And those choices commonly follow “standard (medical) protocols and (are) in line with family wishes regardless of preferences recorded in advance care directives.” Australians, like the majority of people everywhere, would choose to die at home, Saul says; but “the entire structure and funding model of Western medicine greatly favors tertiary and hospital care over that provided in the community.”

Saul suggests that “the medical system at all levels would need to become proactive in creating genuine opportunities for choices to be available. This means asking more, offering more education, taking choice seriously and pushing back against a legal system that favors defensive medicine and over-treatment even in the same breath as pushing ‘patient autonomy.’”

So, is there anything hopeful on the horizon for the end-of-life experience? Definitely. Ottowa, Canada psychologist Morry Appelle and his wife, therapist Christine Appelle presented a paper on a discussion group they started five years ago “in an attempt to address more consciously and formally our own concerns of death.” They were surprised to find eager participants who became faithful, regular attendees, and who agreed to allow videos of some of their meetings to be shared. It is a remarkably effective way to confront mortality.

Planet earthThis writer left Lisbon urging the Appelles to publish a book about their novel idea, but you don’t really have to wait for the book. A group of friends or strangers willing to meet together for an extended period of time and simply talk through everyone’s fears and concerns offers an invaluable way to face, and embrace, life’s end. Such an experience could well lead to the patient autonomy and personal choice currently under threat in wealthier nations around the globe. It would undoubtedly help to have someone like Morry &/or Christine Appelle as facilitator. “Mostly,” they said about their experimental group, “we wished to look more intimately at the mystery of life and death, thereby dispelling some of its associated anxiety and fear. To the extent we could live out this life as fully and consciously as possible, we proposed that lifting the veil on death was a reasonable place to begin.”

The Lisbon conference did a lot of veil-lifting. Also lifted up? Questions worth pondering, wherever on this fragile planet we happen to be sharing our fleeting mortality.

Appearances from Beyond the Grave

The End of Life Experience: Lisbon conference #2

Say you have a daughter or granddaughter who flunked out of her expensive school and caused severe friction between you. Now imagine you’ve been dead for a few years – OK, this page is all about imagination just now – and that errant offspring just finished a PhD program, with honors. She creates a hologram of you, calls it into being and holds up the graduation photos. “What do you think!,” she asks? “Oh,” you say, in your formerly mortal voice, “I’m so terribly proud of you. Congratulations!” You smile broadly, and your offspring smiles back.

holographic doveWelcome to the 2030s. Or probably early 2020s. Holograms are here, and the potential for use in after-death encounters is just one element of this technological wonder. That vision of the end-of-life/afterlife was offered by Sierra College professor Kim Bateman, at the recent conference I was privileged to attend, in a fascinating presentation titled “Dialogues with the Digital Dead.” Bateman suggested useful possibilities such as “allowing the dying to finish unfinished business and the bereaved to more vividly imagine their loved ones without a physical body.” But her intent was also to look at “ethical concerns about consent, privacy, and the emotional safety of those participating” in what today seems more science fiction than potentially useful technology. Conference participants had a lot to say.

If you watched the halftime show at this year’s Super Bowl (I did not, so this is hearsay) you saw a performance by the wildly popular artist Prince. Since he has been dead for some time now, it was not really possible to book him – but it was possible to create a hologram, and that was what you saw. Someone at our conference said Prince had actually been opposed to holograms – which raises ethical issues he is no longer able to discuss.

But here we are. These incredibly realistic holograms can be digitally, posthumously, created by, say, your children or grandchildren, Bateman explained. The computer digs through your electronic history: every email, voice mail, text, Facebook post, Instagram picture, etc, etc, etc. What emerges is the pre-death you.Holograph dancer

Should this bring about a posthumous reconciliation between you and your formerly deadbeat offspring, that seems a clear benefit of the technology. But as with most questions surrounding end-of-life issues today, a lot is not so clear. Your surviving friends and relations will continue to grow and change after you die. Not so the holographic you. It has you frozen in time as the pre-death you. What if you had lived a little longer and decided a college education wasn’t all that important? Here’s your hologram being pleasant, but reconfirming the mortal you as a judgmental grandma.

As with other contemporary end-of-life issues covered at the Lisbon conference, this one raised a long list of questions. Would you want to be recreated in a hologram after you die? For how long after you’ve been gone? To whom should you leave instructions pro or con – or should you stay out of it and hope for the best? If a holograph of you is created, with whom would you want it to interact? Or are there those with whom you would specifically not want to interact, holographically speaking? Should you have the right to make these decisions yourself, while you’re still in the flesh?

If these questions seem all too spooky and futuristic, I apologize – but the spooky future is upon us.

A Global Look at Death & Dying

Three things you and I have in common with the rest of the world: We are born, we live, we die.

Lisbon - Conference brochure
Conference brochure

Dying being so universal, it seems appropriate to talk about it. But the truth is we seldom do that, unless it’s happening to somebody else. An interesting group of people who do talk about it got together recently for a global conference in Lisbon I was lucky enough to attend, The End of Life Experience: Dying, Death and Culture in the 21st Century. It was put on by Progressive ConnexionsInterdisciplinary Life, a not-for-profit network registered in the U.K. (Freeland, Oxfordshire) and a successor to the organization that ran earlier conferences I attended in Prague and Budapest. Full disclosure: Part of my motivation for the hard work of creating papers for these events is the mesmerizing pull of Prague, Budapest and Lisbon. That mea culpa is now out of the way.

As end-of life conferences go, this was the best. Not because any great, existential questions were answered, but simply because it proved so eloquently that we’re all in this life (and death) together. We struggle with the same questions about pain, loss and grief; we face the same dilemmas about aging, illness and dying itself. Whatever corner of the planet, whoever we are.

Lisbon - Castelo view
Lisbon at dusk

In my group in Lisbon were a couple of anthropologists, professors of everything from Philosophy to Nursing to English Literature, an actress/storyteller, some doctors & nurses & clinical psychologists, an interfaith chaplain, a textile artist – just lovely people from corners of the planet like Portugal, the U.S., Canada, Malaysia, U.K., Australia. Ordinary people sharing extraordinary insights shared below (and in subsequent posts on this page.) No attention was paid to titles and degrees – a very good thing for me, since an MFA in short fiction wouldn’t exactly be at the top of the list; attention was paid only to the voices, insights and generously shared thoughts. Here’s the first report:

Pain. Nobody gets out of life without pain, and since it’s often a big factor in end-of-life experiences, pain got its share of attention in Lisbon. Conference chair Nate Hinerman (a professor at Golden Gate University in San Francisco) submitted a paper titled “The Death of Hospice” which was in the first conference segment. Because he was committed to keeping to a strict time schedule – and this was a talkative group not easy to settle down – Hinerman skipped the actual presentation of his own paper. But it was appropriate to the broader issues addressed in the first segment, of which I was a part. There are some big questions here.  Pain

“I argue that as boundaries blur between palliative care, hospice care, and patient-centered curative care,” Hinerman writes, “ultimately, palliative care ought to the goal.” Palliative care means, essentially, do everything to alleviate pain – for patient and family alike. Focus on quality of life rather than life-extending treatments and technologies. “Patients do not benefit,” Hinerman says, “from boundaries like those, say between disease-centered care and palliative care. Or say between palliative care and complex chronic conditions management. Or again, especially between palliative care and hospice.”

In other words, are these fine points (which are eternally argued by professional groups – as well as insurance companies) focused on you and me – patient and patient-advocate – or somewhere else? Boundaries get blurred. “We still need policy changes to support this (palliative care) work, and payment structures to ensure coverage of palliative care.” Hinerman says.

Which brings us to another common theme: money. In both the formal sessions and in casual conversations throughout the conference, the issue of the almighty dollar was often raised. The problem of how to pay for healthcare needs is not confined to the U.S. But more common, and more complicated, is the also-universal question of distribution of finances. Such as: if we spent less on the last few days of life – emergency room and intensive care unit costs are significant especially in the U.S. – could we put those dollars to better use somewhere else?

Lisbon presentation
Doing my presentation

My own paper looked at two different models of Continuing Care Retirement Communities in the U.S. One is a church-related not-for-profit community with independent living, assisted living, nursing and dementia units. Newcomers must be mobile and reasonably healthy, and pay a substantial entry fee, but – as my brother-in-law remarked when he and my sister moved into a similar facility in another state, “the advantage is, they can’t throw us out.” The other is a condominium building in which residents own their apartments but buy into the management company, a national for-profit corporation which furnishes meals, assisted living in owners’ apartments, activities, etc. Both have substantial monthly fees; the condominium community’s are higher, but when a resident dies at least the heirs profit from the unit’s sale. CCRCs now number almost 2,000 across the country – and, while fairly well regulated, none of them are cheap. It is a very big business. One of my questions is: should these populations of aging and dying Americans, among the most vulnerable of groups, be caught up in a multi-billion-dollar enterprise? If something comes up that requires a choice between the aging residents and the bottom line, which direction do giant corporations usually go?

After my presentation, which was mostly a group discussion about such choices, a conference speaker from Malaysia approached me to apologize for not having participated. “In my home,” she explained, “if I were to allow my parent to live in one of those places, no matter how nice it might be, it would bring great shame on my family. Our culture mandates that the family take care of its aging members.” Ah, so. In our U.S. culture, that was also true as recently as two or three generations ago; but we have become so scattered, and so technologically and institutionally advanced, that living with family through dying is a rarity today.

All of the above offers more questions than answers. But they are universal questions and worth pondering: When you’re seriously ill and in pain, what kind of care would you choose? Where would you prefer to die, ICU or at home? Where will you spend the retirement years leading until you die? Pondering – and creating written plans – could avoid a lot of grief for you and loved ones alike.

Lisbon conference group
The 2018 EOL Experience Conference Group

 

Next week: The Lisbon Conference: Appearances from beyond the grave

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

in addition to supplying trained providers, and maintaining ongoing public engagement.We need to increase the consumer demand, and at the same time, continue to pursue palliative care with hospital administrators, so that those services can be bolstered.