Seattle nurse vows to create region’s first hospice for children


She pages through a book of photographs filled with the faces of children. And the letters they’ve written.

The images are of young people who lost their battle with cancer, but spent their final months expressing thoughts about life, love and hope.

Suzanne wants to make sure those final months can someday be spent not in a hospital, but in the nurturing environment of a children’s hospice.

“We can do this,” said the oncology nurse, who has worked at Seattle’s top hospitals. “We can set an example and a template for the rest of the country and show them what can happen when a community comes together and cares about their children.”

This has become Suzanne’s mission since she learned years ago that there are only two children’s hospices in the entire country. Not one in all of the Pacific Northwest, not even Seattle.

“Because it makes people feel uncomfortable nobody’s talking about it and therefore nothing is being done,” said Suzanne.

She has more than thirty years of experience taking care of cancer patients, mostly children.

“Somebody needs to do this. I’m somebody,” she said. “So I founded Ladybug House.”

For the past two years Suzanne has dedicated herself to organizing, advocating and fundraising on a quest to transform her idea into reality.

Ladybug House has gained momentum and support, but what the project needs most is $12 million and a 3-to-5-acre plot of land to start build what she envisions to be a state-of-the-art facility serving young people in need of hospice care.

While some families of terminally ill children are able to take their children home, the burden on parents can be overwhelming.

Gienna Njie is a mother who was stunned to learn there was no hospice option for her daughter, Ahmie, who passed away June 14th after battling a rare sarcoma.

“Kids do die and kids do suffer and they need a place where they can go to be happy,” Gienna said. “It’s so important that kids and their families can live in the moment in the last days and do some amazing things and have memories.”

And that, according to Gienna and Suzanne, is the unique setting a hospice can provide. Hospitals, they say, provide excellent care, but the end-stage of life does not have to unfold in a clinical setting.

“Ladybug house will be a place not just about end-of-life care,” Suzanne said. “It’ll be a place where families have a break during the unimaginable, during those hard times. They don’t have to be the caregivers all the time. They can be cared for.”

The hospice will also provide opportunities for children to express themselves through art, to have pets available and to interact with other families going through the exact same experience.

Suzanne’s plan calls for suites where families can sleep overnight for extended periods of time, and communal kitchens where people can cook their own meals or have meals prepared for them.

“It’ll be a place where legacies and memories can be made and where families can celebrate every day,” she said.

Gienna says it was a privilege to be the primary caregiver to her 14-year-old daughter, but the stress of becoming a de-facto home nurse was daunting at times.

“I would not have wanted to be anywhere else, but it was exhausting and it took away from actually being able to spend as much quality time with her, to just be a family without worrying about oxygen tanks and medications,” she said.

Gienna describes her daughter as strong, creative and filled with exuberance for living life to its fullest.

“She was somebody who could walk into a room and everybody would smile and say, ‘who is that beautiful girl?'” Gienna remembers. “Ahmie was well-loved and she was such a phenomenal person and a loving person.”

In the moments when Ahmie was in greatest pain, they would touch their heads to one another and focus on breathing. And then they would talk.

“We started to have conversations about what we could do to help other children that were suffering,” said Gienna. “I said if you’re not here I will make sure that children don’t suffer as much as you have had to suffer.”

Gienna learned about Suzanne’s mission to provide a hospice option to children like Ahmie.

When moments of discouragement or frustration arise, Suzanne finds inspiration in that book of children’s photos and letters.

“When I think I can’t do it any more I look in here and remember that I don’t have a choice,” she says. “This isn’t about me. It’s about them. It’s about them and their families and that they all deserved better.”

Suzanne says the U.S. Is far behind other countries when it comes to providing hospice care for children. There are more than 50 in the United Kingdom, 8 in Canada and 5 in Australia.

The children’s hospices in the U.S. are in California and Arizona.

It is frustrating for Suzanne and her supporters that there are about 3,000 hospice facilities for adults in this country and 400 for pets.

560,000 children across America are currently living with life-limiting illnesses.

Ladybug House has adopted a mission statement: “If we cannot add days to the life of a child, we will add life to their days.”

When you meet and listen to Suzanne Gwynn, you leave believing that she will succeed — that in the near future Seattle will have a hospice that will transform the lives of children and their families.

The following links provide more information about Ladybug House and how people can help.

Complete Article HERE!

Before I Die: Why everyone’s talking


Christine Corti knows how hard it can be to talk openly about death and dying. The 39-year-old graphic designer for Samaritan Healthcare & Hospice spends her work day surrounded by the discussion.

Her own mother scolds her when Corti says someone has “died.” Her parents are more conservative than she is, more private, more dignified, she explained.

Christine Corti
Christine Corti leads a discussion about end-of-life wishes and care with Samaritan Hospice employees.

“They didn’t grow up in the social media world where people are talking about what they ate,” said Corti, who also handles Samaritan’s social media. “You didn’t have intimate conversations about a lot of topics, including being sick and dying.”

But the discussion is more important now than ever.

Last year, Samaritan launched headlong into a project intended to break down those unspoken conversation barriers. It devised a campaign asking people to talk about their end-of-life care, using community events and games as conversation starters.

The work grew out of Samaritan’s own experience, as employees shepherded families making critical medical decisions for their loved ones, explained Joanne Rosen, who leads Samaritan’s initiative.

“Those decisions are heart-wrenching,” Rosen said. “We really believe that the best time to start having those conversations is early on. We suggest while we’re all healthy, not just when somebody is diagnosed.”

The need is clear.

According to a “Health Matters” poll conducted by the New Jersey Health Care Quality Institute and the Monmouth University Polling Institute, more than 54 percent of New Jersey residents have no legal documents expressing their wishes for end-of-life care. Another 38 percent have never talked about advanced care planning.

But people should make that conversation part of their routine health care, even when in their 20s, said Dr. Stephen Goldfine, Samaritan’s medical director.

“If you start having these conversations, it normalizes the conversation,” Goldfine said. Starting in 2016, physicians will be reimbursed for having that conversation with patients, which Goldfine called “a big step forward.”

Often, medical care is provided without knowing what the patients’ desires are, he explained. Decisions are often made when patients aren’t able to make them. That could mean a person’s life is extended through aggressive interventions, such as long periods spent on breathing machines, against their wishes.

“Just because we can do something, should we do it?” Goldfine asked. “For physicians, as we have more and more interventions, it becomes harder for us.”

Everyone needs to define his or her own quality of life, he explained. A self-defined “talker,” Goldfine said if he can no longer have a rational conversation with his loved ones, he doesn’t want aggressive care to extend his life — “I just want to be kept comfortable.”

Getting young people to talk about death isn’t as hard as one might think. That same “Health Matters” poll found 73 percent of respondents said they are comfortable with the idea of aging and death, and start thinking about it as early as age 30.

In some circles, it’s even earlier.

For the past nine years, Samaritan has helped Moorestown Friends School offer a semester-long course on hospice care. And though the class delves into difficult territory, it’s become a popular elective, explained Priscilla Taylor-Williams, a teacher who leads the religion department at the school.

“I think in some ways, it’s kind of a relief to be able to ask the real questions, and share some concerns,” Taylor-Williams said. “I think it helps that all of the adults who talk to them are comfortable. That’s the huge piece right there. … We are not afraid of this conversation.”

And it’s not like teens haven’t encountered death in their own lives. Indeed, the course was launched after the deaths of a teacher and a student. After taking the course, some students have used what they learned in their own families, Taylor-Williams said.

“I know kids talk about it,” Taylor-Williams said. “Most teens I know have lost someone by the time they’re in these high school years, or they’re watching someone go through some pretty serious illness in their families. I think it’s helpful to have a way to talk about it.”

Corti, the Samaritan graphic designer, thinks younger people are more open to a discussion about end-of-life care. She suggests making it a part of casual conversation, when out to dinner or in a car ride.

“Just put little droplets of those thoughts out there,” Corti said. “It just might help open that conversation for the next time.”

To Die At Home, It Helps To Have Someone Who Can Take Time Off Work

Having a loved one take at least two weeks off work increased the likelihood that terminally ill cancer patients could die at home.

By Lynne Shallcross

When a family member of mine was dying of cancer, her husband’s boss told him to take all the time he needed to care for her. She was granted her wish of being at home when she left this earth, surrounded by those she loved most.

But a wide base of support is needed in order for a patient’s wish to die at home to be made real — including, in some cases, whether someone can take time off work to be with their loved one in their final days, a study finds.

Terminally ill cancer patients whose relatives took at least two weeks off work in the three months preceding their death had a greater likelihood of dying at home, compared with patients whose relatives took no more than three days off.

The study, which was published in BMC Medicine on Thursday, looked at the deaths of more than 350 cancer patients in London. Using feedback from those patients’ loved ones, researchers found that four factors could explain 91 percent of deaths that occurred at home: patient’s preference, relative’s preference, home palliative care or district/community nursing.

Having a comprehensive home-care plan in place is crucial, says lead author Barbara Gomes, a research fellow at the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation at King’s College London. That should include specialist palliative care services and the availability of around-the-clock nursing. The number of home doctor visits also increased a patient’s chances of dying at home.

But researchers also identified three factors that had been previously overlooked yet still weighed into whether a patient died at home: the length of time in which the family knew the patient’s illness was incurable; discussion of the patient’s preference with family; and the number of days family members took off work in the three months before the patient’s death.

There are a variety of possible explanations for the connection between relatives’ days off work and a loved one’s at-home death, but Gomes is careful to point out that this retrospective, observational study can’t draw a cause and effect on this point.

Some governments have recognized the importance of being with a loved one who is dying and have set up support programs to better facilitate family caregiving. Gomes points to a compassionate care benefit in Canada, which offers employees a paid employment insurance program if they need to care for a gravely ill loved one.

Only three states have paid family leave policies: California, New Jersey and Rhode Island. Both Washington, D.C., and the state of New York are considering paid family leave legislation, and the FAMILY Act was introduced in Congress this year with the goal of providing a national paid family and medical leave insurance program.

David Bolotsky, founder and CEO of the online marketplace and retailer UncommonGoods, provides his employees at the Brooklyn-based company with paid leave. Not all American workers are so lucky: Every company has a different policy and different leave benefits. Although many workers are eligible for the federal Family and Medical Leave Act to care for a child, parent or spouse with a serious health condition, that leave is unpaid, which can make it financially impossible.

Bolotsky argues for providing paid family leave to all employees, as he did recently in an op-ed in support of the New York bill. “For most of us, nothing is more important than our families,” he says. “The folks who raised us ought to be able to have a dignified passing, and being able to be there with your loved ones is really important.”

The British study also found that dying at home was more peaceful for the patient and led to less grief among their loved ones. And the people who died at home didn’t experience more pain than those who were in a hospital.

Though health care should ideally be patient-centered, Gomes says remembering the crucial role that relatives play in the decision-making process and in the actual caregiving is important.

She recommends that health care providers encourage the patient and loved ones to discuss preferences for where the terminally ill patient will die, as well as acknowledge that preferences may change as time goes on.

Providers should also help the patient and relatives become aware of the medical supports and services available to them, along with explaining that staying at home to die may not be medically feasible.

Complete Article HERE!

The Biggest Mistake Pet Owners Make at the End

City dog
City dog


If I had a big huge red pen and could permanently strike five words from the Standard Veterinary Dialogue, it would be this: “You’ll know when it’s time.”

Waiting for The Look

Wouldn’t that be great, if pets had a little button that popped up like a Butterball turkey when they were ready to be euthanized? It would eliminate a lot of agonizing on the part of loving pet owners who are struggling with one of the most significant decisions they will have to make in a pet’s life. But that’s rarely how it actually works.

Perhaps you’ve heard people talk about “The Look,” the appearance a pet has when he or she is ready to depart this Earth. “You’ll know it when you see it,” they say, and they are right. It’s hard to describe, that sort of intuitive emotional bond that develops between owner and pet when they are signaling that they are done. I’ve seen it and I agree, it’s hard to miss. It provides a great deal of reassurance to pet owners to know that their pet seems in agreement that it’s time for the next adventure.

The only problem is, this doesn’t always happen.

Pets have other ways of communicating with us beside a meaningful gaze that speaks to our soul; namely, their behavior. Veterinarians experienced in end-of-life care work with very specific quality of life assessments that can give more subjective endpoints than simply “a look,” which can be key when an owner is waiting for a sign that may not come and ignoring all the other cues that a pet is communicating.


The Quality of Life Assessment

Appetite, mobility, hydration, pain, interest in their surroundings, and hygiene are all very specific categories we can assess to determine a pet’s quality of life. Think of it less as a “yes/no” switch that gets flipped and more like a spectrum as a pet approaches death. There’s a large grey zone towards the end where owners could make a good argument for or against it being “time”, and that is the agony and the burden we face as pet owners.

I like the quality of life assessment that uses multiple variables to assess a pet’s condition because all too often, people focus on one specific thing. “Radar hasn’t gotten up for a week,” an owner will say. “He cries all night, soils himself, and pants constantly, but he ate a piece of hot dog yesterday and wagged his tail once, so I don’t think it’s time yet.” In these cases, I counsel owners that we don’t need to wait until every moment of a pet’s waking hours are miserable before making the decision to euthanize.

It’s ok to go out on a bit of a high note. It is one of the blessings of euthanasia, that we can say goodbye in a controlled, peaceful environment and eliminate the pain and stress of a crisis moment at the end.

Death used to be as mysterious for me as it is for most people, but after years working with pets Death and I have become, if not friends, at least very collegial. With that under my belt, the only thing I can tell you with certainty is this: The only way you’ll know that it’s time, truly and without doubt, is when the pet actually stops breathing. Everything else is open to interpretation.

Rarely do people tell me after the fact that they let a pet go too soon. If anything, most feel they waited too long. We have a saying in our field that I repeat on a daily basis to my clients:”It’s better to be a week too early than a minute too late.”

Complete Article HERE!