Finding the freedom to live and die well

By Mary Matthiesen

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

How Men Grieve

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

By Jackson Rainer

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

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

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

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

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

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

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

Defaulting Into Solitude Rather Than Connection

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

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

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

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

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

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

Helpful Road Markers for Healing

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

How to love dying people.

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

By

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

Let’s begin by saying…

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

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

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

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

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

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

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

But it’s still controversial.

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

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

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

So let’s talk this through, shall we?

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

Acknowledge that this is NOT ABOUT YOU

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

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

Get help

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

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

Empathize

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

Plan

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

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

Shift your perspective

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

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

Honesty

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

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

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

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

Complete Article HERE!

Flipflops and tank tops, sockless in sandals…

and dying in Mexico

by Russ Hilderley

USA AND CANADIAN expats face a small mountain of paperwork should someone close to them die in Mexico. An even higher mountain of forms, certified translations, lists of possessions, is forced on loved ones left behind, should the deceased not have any type of ” Last Will and Testament.”

In 2019, 50,000 Canadians were living in Mexico. 182 died. 75% were from natural causes which likely does not include “seasoned” expats sidestepping sidewalk “cenotes”, tripping over abandonned building materials or struck by vehicular traffic while navigating uneven walkways and driveway indentations.

It would seem pedestrians are trampling on private sidewalks originally built by the abutting landholders, but never maintained by them. Uneven heights, slopes, broken curbs and the like can reak havoc on retirees who fly here and walk everywhere thereafter.

Two and a half million Canadians visited Mexico as tourists last year. A significant percentage are in the autumn years of their lives. They may be in Yucatan for six weeks or six months, to escape the colder climate “up north”! Snowbirds(as Canadians and residents from the northern U.S. are called) have an inherent duty to their families “back home”! All expats and tourists alike would be well advised to make it easier to cope, upon the death of a loved one. Important and critical personal information about the deceased must be available to the Mexican authorities from day one. Regardless of your country of origin, the burden is essentially the same.

The whole procedure following the death of an expat residing or visiting Mexico can be daunting for next of kin. The deceased’s identity must be thoroughly established in accordance with Mexican laws.

If the name on the birth certificate is even slightly different from their passport, the transition from one name to another MUST be explained and vertified accordingly. It is particularly cumbersome, should the deceased be a woman. Her birth name could be different through one or more marriages. In each step,the documentation will require translation to “Español” by a registered and authorized translator. The same rules apply to ALL documentation required. “The Last Will”, the identification of all possessions with current valuation held in Mexico by the deceased and the name(s) of next of kin who should be notified, must all be translated in to Spanish .

Expats are urged to maintain a special file back home, or here in Yucatan or Mexico. A designated family member or friend should be aware of this file and where it is stored. The”paperwork” could already be translated and certified. The “executor” of the expat’s estate should be identified with all neccessary contact information tucked away with the deceased passport .

Representatives from the Canadian Consulate in Cancun and similarly designated personnel from the USA Consulate in Merida, appeared before an overflow crowd of over 150 expats at Flamingos Restaurant on the Malecon in Progreso, last Tuesday January 14th,2020.

A funeral home in the Yucatan, is a primary step, to walk you through the process. Cremated remains can be exported within a day or two. A casket requires one or more weeks . The Funeral Director can not forward any valuables such as rings and other jewellry, computers etc..These must be claimed by the contact identified in the Will, or otherwise verifiable family.

Expats living in Yucatan as “Temporary or Permanent” residents should have the LONGFORM marriage certificate which is normally not issued but available in the State or Province where the marriage was performed. This document and your birth certificate should be carried with you as you travel.

Most travellers are optimistic and excited about spending their vacations and retirement without giving much thought to the consequences if they die abroad. Sure,they may have medical and life insurance but forget all the details and information required to repatriate their remains.

To use the now famous phrase quoting reknowned Woody Allen,when asked what would happen to his fortune when he dies, he replied: “If I can’t take it with me, I’m not going” !

We all wish it was that simple!

Complete Article HERE!

Breathing New Life Into Death

5 Tech Companies From Female Founders Making Sure No One Grieves Alone

by

There’s a movement afoot, and as the new Broadway Beetlejuice show suggests; it’s all about death. From Death Cafes and Death Over Dinner, to the surge in new Netflix shows like Dead To Me and After Life, new life is pouring into old conversations about death. After decades kept firmly backstage, people are talking about death and grief, and bringing difficult conversations into the limelight.

Until now, the typical North American death-phobic response we have upon hearing of someone’s loss is reduced to a quick, “I’m sorry for your loss,” on Facebook. We may send flowers, or a card, but these often feel like empty gestures that do little to really support anyone. Most people who have just lost someone they love are in very real need of help, and fast. Traditional supports seem antiquated, expensive, and worse – impersonal.

Fortunately, help is here. In Baltimore, Chicago, New York, and Seattle, a group of female founders are on a mission to revolutionize death care and make sure no one grieves alone. Motivated by their own experiences with death, these women have created easy-to-use, thoughtful tools to help people navigate loss. Of course, death sucks, any way you look at it. No online tool can bring our loved ones back. But these women are working hard to normalize conversations about death, and make it easier – much easier – for people to help each other through grief.

First, meet Brooklyn-based Liz Eddy and Alyssa Ruderman, who co-founded Lantern to provide people with step-by-step guidance on how to navigate their lives before and after a death. When Liz’s Grandma died, she turned to Google in search of answers to her myriad questions about everything from funeral planning to closing accounts. What she found was a morass of unwieldy content, and none of the hand-holding she was looking for. So, Liz and Alyssa created Lantern, as a single source of guidance and information for end of life and death planning. It’s free to use their custom checklists and get help making your loved one’s funeral or celebration of life, everything you want it to be. I love that Lantern makes people feel empowered at a time in their lives when control is hard to come by.

Once you’ve survived the funeral, the daunting realities of grief come tumbling down. Litsa Williams and Eleanor Haley co-founded What’s Your Grief after they each lost a parent. Based in Baltimore, Litsa and Eleanor have built an incredible suite of practical and specific content and resources to help grieving people find a path forward. With their focus on education, exploration and expression, What’s Your Grief offers articles as well as affordable online courses on topics ranging from how to sort through a loved one’s belongings or develop strategies for surviving the holidays while grieving.

If you’re looking for ongoing grief support, Seattle-based Grief Coach sends personalized text messages all year long, based on your loss. And if you have friends and family who want to help, but aren’t sure how, they’ll receive tips and reminders too. Everyone’s messages will be customized based on things like cause of death, age, and your relationship to the person who has died.

I was inspired to create Grief Coach after the death of my husband and (a decade later) his best friend. After delivering the eulogy at my friend’s funeral, I was overwhelmed by the countless friends and family members who wanted to apologize for not having been there for me when my husband died. They were afraid, they said, and just didn’t know what to do. I created Grief Coach to answer the question of “I want to help, but don’t know how,” so that no-one would have to grieve alone.

Also in Seattle is Laura Malcolm, who founded Give InKind after losing her daughter. Laura had people around her who she knew wanted to help, but instead found herself in a room literally overflowing with flowers with no idea what to ask for, but a long list of things she wasn’t able to cope with on her own.

Give InKind brings together care calendars, fundraising, and wishlists. If you’re looking for a way to coordinate support, raise money for funeral expenses, and make it easy for friends and family to support you after a loss, GiveInKind is a great place to start. It’s free to create a page, and from there you can invite others to join and contribute.

And finally meet Ali Briggs and Rachele Louis in Chicago, who founded LifeWeb 360 after a friend’s brother died unexpectedly. As the years passed, Ali’s friend saw people’s memories of his brother fading away. He was worried that he couldn’t remember the sound of his brother’s voice anymore. LifeWeb 360 is a multimedia scrapbook that makes it easy for people to join together to collect and share memories that are then stored and shared online.

These eight women have created five valuable tools that recognize the power friends & family have to make a difference, after a loss.

LA mortician, Caitlyn Doughty, captures the no-nonsense spirit of these founders best, reminding us that; yes, there’s a movement afoot – but we don’t want to be a movement. Death is part of life, and what we really want is to normalize difficult conversations and bring death & dying into our day-to-day lives.

With founders like these women taking the reins, I have no doubt that we’re moving quickly towards a world where everyone has the help they need, after a death.

Complete Article HERE!

Between life and death:

What a neurologist learned when his brother-in-law fell into a coma

In neurology, there’s a “middle ground” between life and death that providers and patients’ family members alike struggle to navigate—but a new subspecialty could help improve communication around patients’ care, Joseph Stern, a neurologist who’s found himself on both the provider and family side of these difficult brain injuries, writes for the New York Times‘ “Well.”

A family member’s aneurysm leads to difficult decisions

Two years ago, Stern’s brother-in-law, Pat, collapsed with a brain hemorrhage from a ruptured cerebral aneurysm and was taken to UCLA Medical Center. Stern, as Pat’s legally designated health care power of attorney, gave permission for Pat to undergo a “surgical clipping of his ruptured aneurysm” and flew to California to oversee the rest of Pat’s care and communicate those care decisions with Pat’s family.

“Technically, surgery went well,” Stern writes. “But Pat never regained consciousness.” While Pat wasn’t brain-dead, “he remained deeply comatose,” Stern writes.

This, Stern writes, left Pat in a complicated, but all too common, “middle ground” in medicine: he’d experienced a “neurologically devastating injury without brain death.”

In these cases, Stern writes, care-related “decisions can be more difficult” for both family members and providers to know when to stop life-sustaining care. While brain death “is stark and final,” Stern writes that patients with severe neurological injuries who are not brain dead can survive on life-sustaining supports though in many cases they may never wake again.

Stern and Pat’s neurosurgeon, Gregory Lekovic, decided to give Pat a week to improve, and if he didn’t, Lekovic advised the family not pursue more aggressive measures, such as a tracheostomy and G-tube placement. “Lekovic and I worried it would be difficult to back off after those procedures had occurred,” Stern writes.

Pat didn’t neurologically improve after a week, and it was likely that he “would never regain consciousness,” Stern writes.

Stern and Pat’s family had decided to stop treatment, but on the morning they planned to do so one of the neuro-ICU specialists gave them reason to pause. “[O]ne of the neuro-ICU specialists presented a scenario in which Pat might wake up, become able to walk with assistance, and participate with his family,” Stern writes. However, “When pressed, the doctor admitted he was giving us the best possible outcome, rather than the most likely outcome,” Stern writes.

Stern and the family consulted again with Pat’s neurosurgeon, Lekovic, who said if it were his loved one, he’d “make the decision to end treatment,” Stern writes. According to Stern, Lekovic “seemed genuinely sad” saying this.

The importance of empathy and connection

“Doctors often think it is most important to be precise and not make mistakes; to predict the future with medical certainty,” Stern writes. “In my experience, connection and empathy are far more important than certainty. Patients and families want to know that you care about them and that you appreciate their pain in difficult circumstances.”

To help guide families and caregivers through this complicated medical condition, Stern notes that a new field, called neuropalliative care, has emerged. In neuropalliative care, providers “focus ‘on outcomes important to patients and families’ … ‘to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.'”

Health care providers shouldn’t “focus on the short-term or allow care to be driven by procedures, losing sight of outcome and quality of life,” Stern writes. “We need to approach our patients and their families with open hearts, acknowledging their suffering and the uncertainty we all experience.”

In the case of Pat, Stern explains that his family, particularly Pat’s sons, “appreciated the truth when I explained their father’s prognosis.” Of course, the sons were “devastated at the prospect of losing him,” Stern writes, but “honesty and inclusion in decision-making were important in helping them move forward with their lives”

Complete Article HERE!

Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families

By

“I’m not anti-hospice at at all,” says Joy Johnston, a writer from Atlanta. “But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”

Even though surveys show it’s what most Americans say they want, dying at home is “not all it’s cracked up to be,” says Johnson, who relocated to New Mexico at age 40 to care for her dying mother some years ago, and ultimately wrote an essay about her frustrations with the way hospice care often works in the U.S.

Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She says during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter.

According to a recent Kaiser Family Foundation poll, seven in 10 Americans say they would prefer to die at home, when the time comes. And that’s the direction the health care system is moving, too, hoping to avoid unnecessary and expensive treatment at the end of life.

The home hospice movement has been great for patients, says Vanderbilt palliative care physician Parul Goyal — many patients are thrilled with the care they get.

“I do think that when they are at home, they are in a peaceful environment,” Goyal says. “It is comfortable for them. But,” she notes, “it may not be comfortable for family members watching them taking their last breath.”

Still, when it comes to where we die, the U.S. has reached a tipping point. Home is now the most common place of death, according to new research, and a majority of Medicare patients are now turning to hospice services to help make that possible. Fewer Americans these days are dying in a hospital, under the close supervision of doctors and nurses.

Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease, to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management and quality of life, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.

Usually, hospice care is offered in the home, or sometimes in a nursing home.

Since the mid-1990s, Medicare has allowed the hospice benefit to cover more types of diagnoses, and therefore more people. As acceptance grows among physicians and patients, the numbers continue to balloon — from 1.27 million patients in 2012 to 1.49 million in 2017.

According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care.

For example, one intimate task in particular changed Joy Johnston’s view of what hospice really means — trying to get her mom’s bowels moving. Constipation plagues many dying patients.

“It’s ironically called the ‘comfort care kit’ that you get with home hospice. They include suppositories, and so I had to do that,” she says. “That was the lowest point. And I’m sure it was the lowest point for my mother as well. And it didn’t work.”

Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family, says Dr. Joan Teno, a physician and leading hospice researcher at Oregon Health and Science University.

“Imagine if you’re the caregiver, and that you’re in the house,” Teno says. “it’s in the middle of the night, 2 o’clock in the morning, and all of a sudden, your family member has a grand mal seizure.”

That’s exactly what happened with Teno’s mother.

“While it was difficult for me to witness, I knew what to do,” she says.

In contrast, Teno says, in her father’s final hours, he was admitted to a hospice residence. Such residences often resemble a nursing home, with private rooms where family and friends can come and go, and with round-the-clock medical attention just down the hall.

Teno called the residence experience of hospice a “godsend.” But an inpatient facility is rarely an option, she says. Patients have to be in bad shape for Medicare to pay the higher in-patient rate that hospice residences charge. And by the time such patients reach their final days, it’s often too much trouble for them and the family to move.

Hospice care is a lucrative business — now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren’t building dedicated hospice units or residences, in general, mostly because such facilities aren’t profitable enough.

Joe Shega, chief medical officer at for-profit Vitas, the largest hospice company in the U.S., insists it’s the patients’ wishes, not a corporate desire to make more money, that drives his firm’s business model. “Our focus is on what patients want, and 85 to 90 percent want to be at home,” Shega says. “So, our focus is building programs that help them be there.”

For many families, making hospice work at home means hiring extra help.

‘I guess I’ve just accepted what’s available’

At the kitchen table of her home outside Nashville, hospice patient Jean McCasland is refusing, on the day I visit, to eat a spoonful of peach yogurt. Each morning, nurse’s aide Karrie Velez pulverizes McCasland’s medications in a pill crusher and mixes them into her breakfast yogurt.

“If you don’t, she will just spit them out,” Velez says.

Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get some kind of break each day.


John McCasland (right) of Goodlettsville, Tenn., hired a private caregiver to help with his wife, Jean (left) who suffered from dementia for eight years. Even when hospice took over, he still found he needed the extra help from Karrie Velez (center). Jean died in October after 13 months on home hospice.

When Velez is not around, John McCasland — Jean’s husband of nearly 50 years — is the person in charge at home.

“I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able,” John says.

But what hospice provided wasn’t enough help. So he’s had to drain their retirement accounts to hire Velez, a private caregiver, out-of-pocket.

Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce.

Medicare says hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.

Jean McCasland’s husband hasn’t complained. “I guess I’ve just accepted what’s available and not really thought beyond what could be,” John says. “Because this is what they say they do.”

Families rarely consider whether they’re getting their money’s worth, because they’re not paying for hospice services directly: Medicare gets the bills. John keeps his monthly statements from Medicare organized in a three-ring binder, but he’d never noticed his agency charges nearly $200 a day, whether there is a health provider in the home on that day or not.

That daily reimbursement also covers equipment rentals and a 24-hour hotline that lets patients or family members consult a nurse as needed; John says that gives him peace of mind that help is a phone call away. “There’s a sense of comfort in knowing that they are keeping an eye on her,” he says.

The rate that hospice charges Medicare drops a bit after the patient’s first two months on the benefit. After reviewing his paperwork, John realizes Medicare paid the hospice agency $60,000 in the first 12 months Jean was on hospice. Was the care his wife got worth that?

“When you consider the amount of money that’s involved, perhaps they would provide somebody around the clock,” he says.

Sue Riggle is the administrator for the McCaslands’ hospice agency, and says she understands how much help patients with dementia need.

“I think everybody wishes we could provide the sitter-service part of it,” says Riggle. “But it’s not something that is covered by hospices.”

Her company is a small for-profit business called Adoration; she says the agency can’t provide more services than the Medicare benefit pays for.

I checked in again with John and Velez (Jean’s long-time private caregiver) this winter. The two were by Jean’s side — and had been there for several days straight — when she died in October. The hospice nurse showed up only afterward, to officially document the death.

This experience of family caregivers is typical, but often unexpected.

‘It’s a burden I lovingly did’

“It does take a toll” on families, says Katherine Ornstein, an associate professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York, who studies what typically happens in the last years of patients’ lives. The increasing burden on loved ones — especially spouses — is reaching a breaking point for many people, her research shows. This particular type of stress has even been given a name: caregiver syndrome.

“Our long-term care system in this country is really using families — unpaid family members,” she says. “That’s our situation.”

A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to choose otherwise for themselves.

Social worker Coneigh Sea has a portrait of her husband that sits in the entryway of her home in Murfreesboro, Tenn. He died of prostate cancer in their bedroom in 1993.


Coneigh Sea is a social worker from Murfreesboro, Tenn., who cared for her husband as he died on home hospice. Now, she wants to make sure her children don’t do the same for her.

Enough time has passed since then that the mental fog she experienced while managing his medication and bodily fluids — mostly by herself — has cleared, she says. But it was a burden.

“For me to say that — there’s that guilt,” she says, then adds, “but I know better. It was a burden that I lovingly did.”

She doesn’t regret the experience, but says it is not one she wishes for her own grown children. She recently sat them down, she says, to make sure they handle her death differently.

“I told my family, if there is such a thing, I will come back and I will haunt you,” she says with a laugh. “Don’t you do that.”

Sea’s family may have limited options. Sidestepping home hospice typically means paying for a pricey nursing home, or passing away with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid.

As researchers in the field look to the future, they are calling for more palliative care, not less — even as they also advocate for more support of the spouses, family members and friends who are tasked with caring for the patient.

“We really have to expand — in general — our approach to supporting caregivers,” Ornstein says, noting that some countries outside the U.S. pay for a wider range, and longer duration of home health services.

“I think what we really need to do is be broadening the support that individuals and families can have as they’re caring for individuals throughout the course of serious illness,” Ornstein says. “And I think that probably speaks to the expansion of palliative care in general.”

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