Category: Caregiving

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For Vets, Caring For Sick Pets And Grieving Owners Takes A Toll

By Kasia Galazka

Veterinarians say that helping suffering animals and stressed-out owners can become grueling.
Veterinarians say that helping suffering animals and stressed-out owners can become grueling.

When I walked dogs at a Chicago animal shelter, I wondered how each one got there. Whether a stitched-up pup shirked from my touch or happily greeted me tongue-first, my eyes would well up with salt. I wanted to keep them all.

People who work in animal shelters or veterinary clinics try to save the animals that come through their doors. But they’re at high risk of compassion fatigue, a sustained stress that takes a toll on a caregiver’s mind and body — and her heart.

It can morph into many forms: Some feel guilt or apathy, others turn to substance abuse. Little data exists, but research suggests veterinarian suicide rates are some of the highest in the medical field, and a 2014 study of about 10,000 veterinarians found twice as much “severe psychological distress” in them than in the general public. One 1 in 6 veterinary school graduates say they have considered suicide.

People in the animal community know this is a risk, and they have stories of people they’ve known who have taken their lives.

Among the biggest strains for animal shelter employees is euthanasia, according to a 2009 study published in the Journal of the American Veterinary Medical Association. Derived from Greek terms that mean “good death,” euthanasia is viewed as a humane way to end an animal’s life by organizations including the American Veterinary Medical Association and PETA.

Though rates of animal euthanasia have sharply dropped in the last few decades, about 3 million cats and dogs are estimated to be put down every year. When faced with alternatives like neglectful owners or living on the street, a peaceful death might be the most merciful option, says Stephany Lawrence, a former shelter intake and adoptions manager in Denver. Shelter life can be scary, even detrimental, especially if the animal is ill or has a behavioral issue.

“Nothing is worse than killing an animal, but it’s a really, really compassionate process,” Lawrence tells Shots. The euthanasia is quick; the employees are tender. But the grief of a life extinguished and the suffering that preceded it can linger. “What I struggled with was how anyone could give up a pet or treat animals as disposable items,” she says. “And I actually think that’s probably something shelter workers have a hard time with, as much, or even more so, than euthanasia.”

Private animal hospitals practice euthanasia, too, but there the patient is often a beloved pet. And veterinarians and staff have to manage both the end of the animal’s life and the humans’ grief.

On some days, the tide of clientele truncates how much time and compassion a doctor can give a dying patient or an owner trying to cope. That’s when the fatigue rears for Krista Magnifico, a veterinarian in Jarrettsville, Md., who writes a behind-the-scenes blog “You feel guilty because you’re not there for them in the capacity that you want to be,” she says.

Veterinarians and rescue workers face another challenge: stressed out and even hostile humans. One reason is cost. Veterinary care can be very expensive, even with insurance, and financial constraints can lead to tense situations. If they escalate, stepping out for a breather or bringing in another staffer can help. Sometimes, conflicts escalate to the point where a clinic has to call the police.

Magnifico won’t turn away clients who love and want to help their pet. But if they’re not empathetic to the animal, or the relationship has fractured and no longer benefits the pet, she’ll suggest alternatives, like seeing another clinic. “I have to be very true to the core of who I am,” she says. “And with that, I know that I’m not a veterinarian for everybody.”

Once someone brought in a dog with a bone tumor in its leg. To relieve the pet’s pain, a staff member at Magnifico’s clinic advised that the limb be amputated. But the owner declined the procedure, tied the dog to a tree in front of the clinic, and left.

Sometimes clients ask for convenience euthanasia. Other times, owners threaten to kill the pet themselves. In those cases, the people at the end of the leash cause the most distress for animal shelter and clinic employees.

“The rhythm of a healthy life is fill up, empty out; fill up, empty out,” says Patricia Smith, founder of the Compassion Fatigue Awareness Project, which aims to help caregivers learn healthy forms of self care. But caregivers tend to spend their empathy on everyone but themselves, and they forget to refuel. “The result of that is we have nothing left to give,” Smith says. “We give from a place of depletion instead of abundance.”

“One of the hallmark signs of [compassion fatigue] is that you cannot undo what you’ve been exposed to, and your worldview is forever changed,” says Elizabeth Strand, founding director of the University of Tennessee’s veterinary social work program. Strand noticed a huge need in the veterinary environment for social work, and Tennessee was the first school in the country to create a specialty in veterinary social work. Michigan and Missouri now offer similar programs.

Veterinary social workers provide support for animal-related professionals who need an extra hand resolving stress or stubborn conflict. They can also gently guide grieving pet owners through heartbreak, or help figure out what to do when an animal is a victim of family violence.

Strand and others say that veterinary professionals are becoming more willing to talk about the mental health stresses of their work, and veterinary schools are addressing mental health and emphasizing communication skills.

To bolster resilience, students at Cornell University’s College of Veterinary Medicine participate at the teaching hospital as early as their first year, so that they’re accustomed to working with very sick animals and distraught owners. Students can also staff the school’s pet loss support hotline after special training.

The veterinary school at University of California, Davis, has one full-time counselor and one part-time counselor just for veterinary students. “As our counselor started getting busier and busier, we thought that we had a problem, and what we realized is that this was not a problem,” says Dr. Sean Owens, associate dean for admissions and student programs at Davis’ School of Veterinary Medicine. “We’re actually doing a better job of destigmatizing talking to mental health professionals, meaning that our students are now more likely to drop in and say, ‘I just spent four hours grieving with a client … How do I process it?’ ”

The Davis program provides yoga, art projects, massage therapists — even a surfing club. Clinical skills labs that use actors who practice common scenarios, though awkward, can lift confidence later. The school was the second veterinary school after Colorado State University to offer a “healer’s art” course, which embraces the emotional aspects of practicing medicine.

“What has really triggered [change] has been the greater publicity of suicides of veterinary students,” says Owens. “You’re not fully complete in this profession unless you’re able to grieve and be a human.”

Complete Article HERE!

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BEING THERE: A death doula’s mission

By Ellen McCarthy

Craig Phillips has found that his work as a death doula has given him a greater appreciation for life.
Craig Phillips has found that his work as a death doula has given him a greater appreciation for life.

Before he enters the room, Craig Phillips pauses for a deep exhale.

“Just to let everything go,” he says. “And to remember that I’m here for them.”

Until he walks in, he won’t know whom, exactly, he’s about to see. Today it’s an elderly woman in a blue hospital gown. Eyes closed. Jaw dropped open. Breathing loud and labored, but regular.

There is a little green circle by her name on the white board in the nurses’ station. Hospice center code for “actively dying.”

“She doesn’t have anyone with her,” a nurse says. So Phillips goes, pulls a chair up to her bed and introduces himself.

“I’m not here to poke or prod you,” he says softly. “I’m just here to be with you. I’m just here to sit with you.”

The work of a death doula — Phillips’s work, now — is primarily about presence. He is there to ease the passage from this world to the next. And he knows that the most valuable thing he can offer anyone taking that most solitary of journeys is his company. So he sits, silently wishing them peace and comfort.

Especially with patients who can no longer speak, Phillips has learned to slip his hand beneath theirs, palm to palm, rather than rest it on top. This way, he says, “you get an understanding of how well wanted you are.” When his grip is returned, he knows that he is welcome.

Phillips operates alone, but he is part of a growing army of volunteers and professionals who call themselves death doulas. (Some, opposed to that term, prefer end-of-life doulas, soul midwives or transition coaches.) And like the childbirth doulas from whom they draw their name, their mandate is to assist and accompany. Their patients’ experience may be quieter, more sorrowful, but it is no less sacred. Or scary.

As the baby boomers move into retirement, fresh consideration is being given to what it means to grow old, which measures to take to treat illness and, ultimately, how we die. There’s a growing recognition among hospice workers and palliative-care givers that pain management is not enough. That the spirit must be attended to as much as the body. And that the soon-to-be-bereaved need help along with the dying.

It’s out of this recognition that death doulas are emerging. Most say they feel almost inexplicably called to the role. And profoundly touched by it.

A good death

On a sunny spring day in Alexandria, Virginia, 30 women and one man sit in a windowless hotel conference room, having traveled from all over the East Coast and paid $600 to learn to serve as death doulas.

“Our role is to walk alongside” the dying “in their journey,” says Henry Fersko-Weiss, president of the International End of Life Doula Association (INELDA), one of several organizations offering certification in the field.

The weekend-long training will cover the best ways to touch a dying person, when to use aromatherapy and guided visualizations, strategies to relieve overburdened family members, how to organize a “legacy project” to help capture the patient’s life, assisting at the moment of death and helping loved ones process their grief in the weeks that follow.

On the first morning, Fersko-Weiss, a social worker who worked with hospice facilities for decades before creating an end-of-life doula program in 2003, asks each of the students to recall a death that affected them. How it smelled and looked and felt. How it shaped their concept of what constitutes a “good death.”

One woman talked about her daughter’s stillborn baby.

“That was the hardest hurt I ever felt,” she said. “I didn’t understand how you could take a baby who was full-term.”

Fersko-Weiss nodded and observed that she may be able to transform her pain into something that could aid dying patients and their families.

“If we can touch that place of angst and anguish and despair,” he said, “it may help us to be more present to other people experiencing it now.”

Later, the prospective doulas talk about their reasons for coming. Several had had negative experiences with the death of a close relative. A few were birth doulas who wanted to assist with the exit from, as well as the entrance into, life. One woman had suffered a brain injury and a near-death experience. All said that they wanted to be of service in a way that would make this final transition somehow better for others.

They will be called upon to fill all kinds of roles, Fersko-Weiss told them. Sometimes patients may need help with physical care; other times, families will need assistance with errands or household chores. In all cases it will be a doula’s job to listen, without judgment, to honor the experience of both the dying person and their loved ones, and to facilitate meaningful interactions between them.

“As a doula, it’s important to encourage people to say everything they need to say,” Fersko-Weiss explains, “so that they don’t look back and really regret it.”

Beautiful souls

Craig Phillips’s path to end-of-life doula work wasn’t straight, but he thinks he was always inching toward it. He grew up in Wilkes-Barre, Pennsylvania, next door to a cemetery that served as his playground. In college, he had a chance meeting with Elizabeth Kubler-Ross, the famed psychiatrist whose groundbreaking work shaped our modern understanding of death. And all through his life, Phillips has had an intense awareness of his own mortality.

At 61, he has the look and presence of a yogi, but he spent most of his adult life in the corporate world. Several years ago, his sister called, saying that her ex-husband was suffering from advanced ALS and living in a facility very close to Phillips’ Baltimore home. So Phillips went to see him. And kept going, two or three times a week, for the last 2 1/2 years of the man’s life.

“I’d bring him flowers,” he recalls. “I’d tell him stories. I’d take oil over and rub his feet, stuff like that. Just devoted myself to him. And it was a beautiful thing.”

A man in Phillips’ running club mentioned volunteering as a death doula, so when he retired last fall, he linked up with Gilchrist Hospice Care, which serves more than 750 patients daily in the Baltimore area and established its own end-of-life doula program in December 2009. It has since grown to more than 150 volunteers.

After 20 hours of training in January, Phillips spent a morning shadowing a mentor doula at Gilchrist’s facility in Towson.

“We walked into a patient’s room, and she said, ‘Isn’t this person beautiful?’ I could see that they were. And she said, ‘Yes, all my patients are beautiful,’ ” he recalls. “You walk into a room and there’s someone there with their mouth open, looking very near death. Perhaps no teeth in their mouth and a three-day beard or whatever. And I look at these souls and they’re beautiful. It’s the oddest thing. Their guard is down. They’re just who they are in their most real, beautiful state.”

Phillips has helped long-term-care patients communicate with a letter board and even washed a dog for one family. On his weekly visits to an elderly man who was still alert, Phillips brought videos of the patient’s favorite big band performances.

But with many patients, Phillips just sits, quietly meditating and sending good wishes. He tells them that they are safe. And that they are not alone. One woman was unable to speak, but when he said goodbye after three hours, “she mouthed the words ‘Thank you’ and held out her hands like I was dear to her,” he says.

The work has also produced an unintended side effect. It has pushed Phillips’ awareness of mortality even further to the forefront of his mind.

And happily so.

“The more immediacy, for me, that I have of this,” he says, “the more appreciation I have for every day, every minute.”

Complete Article HERE!

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The way we die: elderly people need end-of-life options

by Mario Garrett

It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?
It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?

It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?

Opioids usually administered in these times are sometimes not enough to stop the agonal stage of death. Agony comes from the Greek word ‘to struggle’. The process of dying, as seen by an observer, is that of a struggle. The stage right before an older person dies is often accompanied by disorientation, struggling to breathe with long pauses in between loud, laboured breaths – called Cheyne-Stokes breathing.

Sometimes a death rattle is heard in the breathing when there is liquid in the lungs. Sometimes the person may start convulsing. This agonal process is eloquently described in the Tibetan Book of the Dead. This is not the way we want to die.

In one study looking at what people said is their ideal way to die, Gilbert Meilaender from Valparaiso University in Indiana suggested a one-word answer: Suddenly! The idea is to live as long as possible at the peak of our vigour and then, when the time has come, to die quickly and painlessly. But this is not the way we die.

With our advancing and encroaching technology, it is more likely that dying will become a more protracted affair despite our wishes. Surprisingly, when we try and hasten the process we, as a society, have responded by punishing those who are trying to help us achieve a painless death.

In the US, one of my neighbours, Sharlotte Hydorn, before her death in 2013, gained a measure of notoriety by offering to mail you, for only $60, a package containing GLADD exit bags – Good Life and Dignified Death. The kit included a plastic bag, medical tubing, two canisters of helium and instructions on how to commit suicide – by placing the bag on your head and filling it with helium, which deprives the body of oxygen. The body does not know it is being denied oxygen since the helium mimics the oxygen molecule. You die peacefully. In the US, more than a quarter of us will likely die in an emergency room, our final departure looking more like a chaotic medical soap opera. Our death will be seen as another medical failure. For the majority of us, this is not what we want or what we deserve.

In Europe and the US, hospice care is gaining ground as the gold standard for end-of-life care. The Malta Hospice Movement is today 001caring for over 1,000 patients and their families. However, Malta Hospice, as most hospice services, is used by too few people. And when these services are used, they are used too late. The result is that most older adults still experience widespread distress in the final stages of life.

The result is that we deal with dying underhandedly. In hush hush tones we conspire to give the dying person a good death. In Malta, Jurgen Abela from the University of Malta’s department of family medicine conducted a survey of 160 doctors. The results are revealing. One in seven doctors were asked by their patients to help them die. Despite this, nine out of 10 would refuse such requests for moral reasons – since a majority were Catholic and this was important to them – despite half of these same doctors accepting the right of individuals to hasten their death. Such schizophrenic response harbours a sense of bigotry.

The religious fervour to curtail euthanasia has not slowed the growing number of states that have legalised physician assisted death. With four US states and four countries that today openly and legally authorise active assistance in dying of patients, the list of states/countries is growing.

There is nothing absolute in these situations. Physicians cannot determine with infallible certainty that someone is going to die, sometimes the medication used does not work as intended, or is delayed, the process of injecting a person with enough opioids to kill them is not family-friendly and it is killing without consent. These are all valid criticism that pose moral challenges.

If we look at how physicians die, what we find is that a majority of them do not go for invasive treatment if they know that it is unlikely to improve the outcome. They chose quality of life over quantity of life and self-medication is high. It takes a special person to go through with euthanasia.

In the state of Oregon in the US, only a small fraction goes through physician-assisted-suicide. In 2013, a total of 71 people went through physician-assisted-suicide out of nearly four million people in Oregon. In Malta this would translate to less than five people a year. There is no ‘thin end of the wedge’. These people, nearly exclusively white, were educated with a diagnosis of cancer (since we know a lot about the progression of this disease.)

Different older adults need different support. Some end-of-life options may not appeal to you, but the option needs to be made available for others that it might help. Euthanasia is about diversity of needs. Not everyone might want or need it but it should be an option for those very few for whom it might help alleviate the pain of dying.

 Complete Article HERE!

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How to prepare for a good death

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Wise words and solid advice from BJ Miller, who thinks deeply about the end of life as head of the Zen Hospice Project.

Death is an uncomfortable topic. Although we’re well-acquainted with platitudes that remind us to seize the moment and live each day like it’s our last, few of us devote real time to envisioning the end of our lives — or the lives of those we love. In contrast, this is a focal point for BJ Miller, palliative care physician and executive director of the Zen Hospice Project, a San Francisco-based nonprofit that’s focused on improving our experience of death. His TED Talk, What really matters at the end of life, prompted such an outpouring of response that we hosted a Q&A on Facebook to hold a larger conversation about end-of-life care, dying with dignity and providing support for patients and families. Here are just some of the questions — and Miller’s answers.

Based on your experiences, what do you find that most people really want at the end of life? – Emilie S.
In general, people yearn for comfort, for their loved ones to be well cared for, to be unburdened and unburdening, to find some sense of closure and peace. But those are generalities and I would encourage all of us to remember that dying people are living and to treat them accordingly. There is so much room for personal preference.

What are good ways to talk to kids about death? – Michelle Q.
It’s important to remember that kids are not just miniature adults. This big topic, like others, needs to be couched in their developmental stage. In general, it’s helpful to avoid euphemisms or overly indirect language. Kids are generally much straighter shooters than we adults. There is a field called Child Life Services that has a lot to say about this subject and can be a great resource.

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People often say they don’t like hospitals; that mental block keeps them from spending time with someone they care about at the moment they need it most. What advice do you have for people who have a loved one in a hospital? How can each of us make that space kinder and better for the senses? – Kate T.
Little things go a long way. Bringing in photographs, familiar objects, flowers are, in my book, always wonderful. Of course, you can always bring in fresh baked cookies — even if your loved one can’t eat, engaging the senses can be potent. Those are some ideas around the external space. Of course, it’s always helpful to cultivate internal spaciousness by being a source of calm.

Death is a hard subject to talk about. How do we talk about this with our families so we can plan? – Danny K.
Several US-based organizations come to mind, including the Conversation Project and the Coalition for Compassionate Care of California. Another tool that people seem to love is the card game, My Gift of Grace. At Zen Hospice Project we also proudly host “death cafes” as a social engagement, and also offer a mindful caregiving program for anyone involved in facing the challenge at end of life or anyone interested in exploring more about this topic.

How does a non-clinical person learn how to care for others at the end of life? It seems like many of us will be in that position. – Don D.
This is exactly why we created the Mindful Caregiving education program at Zen Hospice Project. Estimates are that nearly one third of American adults will either need to receive or provide care to a loved one. We realize there are very few resources to support family caregivers and “informal caregivers” and that the work can be grueling. Zen Hospice Project’s educational curriculum is uniquely designed to enhance and support the wellbeing of both the patient and the caregiver. The program’s balance of social, medical and spiritual practices enables formal and informal caregivers, doctors, nurses and administrators to experience compassion and resiliency at the bedside while reducing burnout and enhancing care.

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Do you have any advice for caregivers about how they can take care of their own mental health? – Ella C.
We know from studies what works. There are two major themes for self care: one is some reflective practice, whether yoga or meditation or walking in the woods; the other is some sharing, talking, processing with people you know and trust. Especially with people who do similar work. Beyond those two major points, I would add to be good to yourself and don’t lose yourself in the role.

What do you think about end of life dialogue being considered as aphysician-reimbursed service in the United States? Given your experience, what do you think are the most important pieces of the conversation? How could physicians be better equipped to have this conversation? How could mindfulness training inform this service? – Liz M.
I’m very excited about this new legislation, both practically and symbolically. The key points are to have an open and ongoing conversation with your physician as well as your family or proxies. In fact, I think the single most important thing you can do is to name your proxy, because the situation needs to be read in real time. Remember this is not a single conversation but one that requires updates over time. Training clinicians to have this conversation is another matter and requires time: I recommend reading Atul Gawande’s book, Being Mortal, as a great resource. Insofar as mindfulness allows us to be more present in difficult situations, it can help set the stage for a more fruitful conversation.

Do palliative health centres offer psychological or other support for families after a loved one has passed? – Kasia S.
All certified hospice agencies are required to offer bereavement services to their communities. Admittedly, these services are poorly funded and generally underdeveloped. There is so much more work to be done helping families process what’s just happened and also to protect the new tenderness they may feel as they head back into the world. On an individual basis, many psychotherapists specialize in grief counseling and can be wonderful resources. On our way to developing more formal programs, we happily receive family members long after the death of their loved ones to revisit the house and the Zen Hospice community.

Can you offer resources for education material, guides for conversations and so on in languages other than English? – Julien G.
A great place to start would be to reach out to your local hospice or palliative care organization. You may also check with the National Hospice and Palliative Care Organization, the Center to Advance Palliative Care or the American Academy of Hospice and Palliative Medicine. You are pointing to a real need for cross-cultural understanding on the subject.

 Complete Article HERE!

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What Are the Levels of Hospice Care?

Medicare Determines Hospice Care Level Definitions

levels of hospice care

By Angela Morrow, RN

Medicare defines four distinct levels of hospice care. This benefit provides goods and services to allow you and your family to stay together in the comfort of your home, unless you need care in an inpatient facility, for the duration of your terminal illness.

The patient is still responsible for the deductible and coinsurance amounts for expenses incurred due to health problems not related to the terminal illness.

Level 1 – Routine Home Care

Routine home care is the basic level of care under the hospice benefit. If a patient resides in a nursing home, it can also be called routine nursing home care, and includes:

  • Nursing services
  • Physician participation
  • Medical social services
  • Home health aide services
  • Counseling services (pastoral, spiritual, bereavement, dietary, and others)
  • Medications
  • Medical equipment
  • Medical supplies
  • Lab and diagnostic studies related to terminal diagnosis
  • Therapy services

Level 2 – Continuous Home Care

If you have continuous home care, a nurse and/or a home health aide will remain in the patient’s home environment for 8 to 24 hours per day. Continuous care is a short-term level of care reevaluated every 24 hours. Some examples of symptoms requiring continuous care would be:

  • unrelieved pain
  • severe nausea and vomiting
  • severe shortness of breath
  • anxiety or panic attacks
  • a breakdown in the primary caregiver support system

Level 3 – General Inpatient Care

Some patients have short-term symptoms so severe they cannot get adequate treatment at home or they may feel more comfortable getting treatment at aninpatient facility.

Symptoms requiring inpatient care are the same as those requiring continuous care (above), only the setting of care may be different.

With inpatient care, nurses are available around the clock to administer medications, treatments, and emotional support to make the patient more comfortable. There are several types of facilities that offer inpatient hospice services:

  • A free-standing facility owned and operated by a hospice company.
  • A hospital may have a unit to provide inpatient hospice care.
  • Long term care facility may lease a unit in a nursing home to a hospice company.

Level 4 – Respite Care

Respite care services are more for the family than for the patient. If the patient does not meet criteria to qualify them for continuous care or inpatient care but the family is having a difficult time, respite care may be an option.

If a patient’s family is the primary source of care and cannot meet their needs due tocaregiver stress or other extenuating circumstances, a patient may temporarily be admitted to an inpatient environment to give the family a needed break or respite. There is a five-day limit on respite care. Once that period expires, the patient is discharged and returns home.

Determining Level of Care

A facility admits patients to hospice on any level of care necessary at that time. The facility can transfer the patients between levels of care as their needs change. The decision to treat someone at a higher level of care falls to the hospice physician, who documents this information. With four levels of care in place, no patient should ever be left in a crisis situation alone.

Complete Article HERE!

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The 11 qualities of a good death, according to research

BY Jordan Rosenfeld

The 11 qualities of a good death, according to research

Nearly nine years ago, I received a call from my stepmother summoning me to my grandmother’s house. At 92 years old, my Oma had lost most of her sight and hearing, and with it the joy she took in reading and listening to music. She spent most of her time in a wheelchair because small strokes had left her prone to falling, and she was never comfortable in bed. Now she had told her caregiver that she was “ready to die,” and our family believed she meant it.

I made it to my grandmother in time to spend an entire day at her bedside, along with other members of our family. We told her she was free to go, and she quietly slipped away that night. It was, I thought, a good death. But beyond that experience, I haven’t had much insight into what it would look like to make peace with the end of one’s life.

A recent study published in the American Journal of Geriatric Psychiatry, which gathered data from terminal patients, family members and health care providers, aims to clarify what a good death looks like. The literature review identifies 11 core themes associated with dying well, culled from 36 studies:

  • Having control over the specific dying process
  • Pain-free status
  • Engagement with religion or spirituality
  • Experiencing emotional well-being
  • Having a sense of life completion or legacy
  • Having a choice in treatment preferences
  • Experiencing dignity in the dying process
  • Having family present and saying goodbye
  • Quality of life during the dying process
  • A good relationship with health care providers
  • A miscellaneous “other” category (cultural specifics, having pets nearby, health care costs, etc.)

In laying out the factors that tend to be associated with a peaceful dying process, this research has the potential to help us better prepare for the deaths of our loved ones—and for our own.

Choosing the way we die

Americans don’t like to talk about death. But having tough conversations about end-of-life care well in advance can help dying people cope later on, according to Emily Meier, lead author of the study and a psychologist who worked in palliative care at the University of California San Diego’s Morris Cancer Center. Her research suggests that people who put their wishes in writing and talk to their loved ones about how they want to die can retain some sense of agency in the face of the inevitable, and even find meaning in the dying process.

Natasha Billawala, a writer in Los Angeles, had many conversations with her mother before she passed away from complications of the neurodegenerative disease ALS (amytropic lateral sclerosis) in December 2015. Both of her parents had put their advanced directivesinto writing years before their deaths, noting procedures they did and didn’t want and what kinds of decisions their children could make on their behalf. “When the end came it was immensely helpful to know what she wanted,” Billawala says.

When asked if her mother had a “good death,” according to the UCSD study’s criteria, Billawalla says, “Yes and no. It’s complicated because she didn’t want to go. Because she lost the ability to swallow, the opportunity to make the last decision was taken from her.” Her mother might have been able to make more choices about how she died if her loss of functions had not hastened her demise. And yet Billawalla calls witnessing her mother’s death “a gift,” because “there was so much love and a focus on her that was beautiful, that I can carry with me forever.”

Pain-free status

Dying can take a long time—which sometimes means that patients opt for pain medication or removing life-support systems in order to ease suffering. Billawala’s mother spent her final days on morphine to keep her comfortable. My Oma, too, had opiate pain relief for chronic pain.

Her death wasn’t exactly easy. At the end of her life, her lungs were working hard, her limbs twitching, her eyes rolling behind lids like an active dreamer. But I do think it’s safe to say that she was as comfortable as she could possibly be—far more so than if she’d been rushed to the hospital and hooked up to machines. It’s no surprise that many people, at the end, eschew interventions and simply wish to go in peace.

Emotional well-being

Author and physician Atul Gwande summarizes well-being as “the reasons one wishes to be alive” in his recent book Being Mortal. This may involve simple pleasures like going to the symphony, taking vigorous hikes or reading books He adds: “Whenever serious sickness or injury strikes and your body or mind breaks down … What are the trade-offs you are willing to make and not willing to make?”

Kriss Kevorkian, an expert in grief, death and dying, encourages those she educates to write advance directives with the following question in mind: “What do you want your quality of life to be?”

The hospital setting alone can create anxiety or negative feelings in an ill or dying person, so Kevorkian suggests family members try to create a familiar ambience through music, favorite scents, or conversation, among other options, or consider whether it’s better to bring the dying person home instead. Billawalla says that the most important thing to her mother was to have her children with her at the end. For many dying people, having family around can provide a sense of peace.

Opening up about death and dying

People who openly talk about death when they are in good health have a greater chance of facing their own deaths with equanimity. To that end, Meier is a fan of death cafés, which have sprung up around the nation. These informal discussion groups aim to help people get more comfortable talking about dying, normalizing such discussions over tea or cake. It’s a platform where people can chat about everything from the afterlife (or lack thereof) to cremation to mourning rituals.

Doctors and nurses must also confront their own resistance to openly discussing death, according to Dilip Jeste, a coauthor of the study and pediatric psychiatrist with the University of California San Diego Stein Institute for Research on Aging. “As physicians we are taught to think about how to prolong life,” he says. That’s why death becomes [seen as] a failure on our part.” While doctors overwhelmingly believe in the importance of end-of-life conversations, a recent US poll found that nearly half (46%) of doctors and specialists feel unsure about how to broach the subject with their own patients. Perhaps, in coming to a better understanding of what a good death looks like, both doctors and laypeople will be better prepared to help people through this final, natural transition.

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‘Death doulas’ help dying people and their loved ones say goodbye

By Kevin Fagan

Henry Fersko-Weiss, co-founder and president of the International End of Life Doula Association, conducts a session at the association’s training at the Omni Hotel in San Francisco.
Henry Fersko-Weiss, co-founder and president of the International End of Life Doula Association, conducts a session at the association’s training at the Omni Hotel in San Francisco.

The emotional crumbling started when she was 14 and a friend was killed in a car crash. Three years later, her father died when his helicopter exploded. When she was in her 30s, her brother committed suicide.

By the time a close friend was murdered three years ago, the coping skills Bonnie Ludwig had for dealing with death were shattered — and she found herself one day on her knees on a sidewalk, sobbing obliviously.

Therapy gave healing, which allowed her to help comfort dying dogs at the pet care company she runs — and which soon led to her sitting in a San Francisco hotel room on Friday, learning how to help people die better.

Ludwig, 45, was taking a class in how to become a “death doula,” someone who helps shepherd the dying and their families into loving, peaceful exits. The man who founded the craft in 2003, Henry Fersko-Weiss, is guiding her and 47 other students through a weekend-long course on handling what for many seems like the worst moment possible — but, if handled deftly, can be a beautiful journey to whatever lies just beyond a heartbeat.

‘Learn to let go’

“Humans hold onto life so tightly,” said Ludwig, who flew up from San Diego to take the $600 training at the Omni Hotel. “We need to learn to let go better. We grieve so badly in our culture, and I have found it is sacred and an honor to be with animals when they die. Now I want to be able to do that with people.”

Fersko-Weiss, 68, has trained more than 1,000 people in his discipline, and this was his first session in San Francisco. People come to his trainings for many reasons, he said — some from pain, like Ludwig, some because they’ve already helped others die and feel a calling to do more. But they all have one thing in common.

“I have found that the people who come to these trainings have a great deal of compassion and want to serve people at this incredible period in their lives — death,” said Fersko-Weiss, who lives in the small town of Warwick, N.Y. “They are self-selecting. Like me, they feel this is a way they can really do some good and help. It’s very intense and very important.”

The idea of finding a better way of dealing with the obliteration of life came to Fersko-Weiss when he was a hospice volunteer and saw too many people missing the last breaths, not saying the words they wanted to say before passing, not feeling complete in what they were leaving behind.

International End of Life Doula Association
Laura Statton attends the training session by the International End of Life Doula Association at the Omni Hotel in San Francisco.

He had a friend who was training at the time as a birth doula — a midwife of sorts, who helps birthing moms and their partners stay comfortable and well-centered — and he found the approach so dynamic he took the course himself.

What he learned there led him to co-found the International End of Life Doula Association. Doula, in ancient Greek, means “woman who serves.”

“It’s just our human nature that we want to be reassured as we die,” Fersko-Weiss said. “We’re going into the unknown, and everybody has fear of passing that boundary between life and death.

“I believe the only thing that counts at the end is having people we love, someone at your bedside, talking to you, telling them how much they love them, reassuring them it’s going to be OK. Those things are important.”

Calming techniques

Students learn techniques for calming the dying and their family and friends, and then they help them find the right kind of intimacy to say the things that need to be said. To cut to the chase about what they want to be remembered for, to compile scrapbooks. To face the end with grace.

Lori Goldwyn attends the training session by the International End of Life Doula Association at the Omni Hotel.
Lori Goldwyn attends the training session by the International End of Life Doula Association at the Omni Hotel.

Sometimes doulas ease pain by having the dying visualize soothing times in their lives or by giving therapeutic touch. And they help plan what the final moments will be like. Sometimes people want candles burning, certain clothes, favorite poems read out loud. Doulas stay at the bedside, ready to recognize when death is minutes away — mottled skin, fingernails turning blue, other clues — so everyone can be prepared.

Cynthia Imperatore, who lives in New Jersey and is helping Fersko-Weiss at this weekend’s training, found that sometimes the simplest actions are the most important.

Recently she was helping a son sit vigil with his terminally ill mother, and found herself sitting at the woman’s bedside, holding her hand while the son stood stiffly at the foot of the bed with a TV blaring in the background. The final minutes were near. It didn’t feel right.

“I had him turn off the TV, put on some classical music, and I said, ‘Come here and hold your mother’s hand,’” said Imperatore. “So he came, and then I said, ‘Tell her these things’ — in Spanish, because that’s what his mother spoke. I said, ‘Tell her she’s done everything right. Tell her you’re grateful. Tell her you love her. Tell her what she did mattered.’

“And what happened is that these were the last words she heard,” Imperatore said. “He didn’t have to carry a sense of unfulfillment with him. It was good.

“What we do is not morbid,” she said with a gentle smile. “It’s a privilege to be there when people are dying. Death takes us to a place where we seek meaning, makes you question what is life. And sometimes it can make you appreciate life more.”

Complete Article HERE!