02/19/18

We Need to Revolutionize End-of-Life Care — Here’s Why

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Because it’s time to start thinking about death differently.

By Laura Dorwart

When Victoria Chang’s mother was diagnosed with pulmonary fibrosis, she didn’t have a single person she felt she could turn to. Six years earlier, her father had a stroke that led to significant neurological changes, and now the young poet realized she alone would have to care for them both. None of her friends had sick or elderly parents, so she felt completely isolated.

What followed was a decade of navigating America’s imperfect end-of-life health care system, without much guidance from the doctors and specialists she so frequently encountered. When asked what she would have done differently over the course of the stressful years, Chang says, frankly, “Everything.”

“Everything was a learning curve, everything new,” she says, noting how she wished there had been more help for people like her. “Emotions were high, and we needed a case manager or a consultant or something. Hospice seemed to help, but in the end, there was only so much they could do.”

Chang’s experience caring for seriously ill loved ones is sadly not unique. Thanks to a combination of denial, a lack of know-how and flawed systems, most Americans don’t have the support they need when it comes to end-of-life care. According to a study by the California HealthCare Foundation:

Furthermore, a majority of those surveyed had not even communicated their end-of-life wishes to the loved one they would want making decisions on their behalf. That’s where Dr. Ira Byock, chief medical officer of the Institute for Human Caring at Providence St. Joseph Health, comes in. A renowned expert in palliative care and the author of The Four Things That Matter Most: A Book About Living and The Best Care Possible, Byock wants to reimagine health care as a more personal, approachable system. He wants to boost the person-to-person communication and eradicate denial — an approach he and his colleagues call Whole Person Care.

Dr. Byock

“[Whole Person Care] attends not just to your medical problems, but to your personal priorities, values and preferences,” explains Byock. “You’re someone with bodily needs but also have emotional, relational, social and spiritual parts of your life, all of which need to be attended to.”

This perspective may not seem all that radical, but it is clearly not the current practice. American medicine is good in that it’s a “problem-based system,” Byock says. “It is organized around your problem list on your chart. Everything we do, by design, responds to a problem on your list.” But life isn’t just a set of problems to be solved; patients have lives that extend well beyond the walls of hospitals and waiting rooms. Health care, in Byock’s opinion, should address this reality at all stages of life.

Perhaps most importantly, Whole Person Care includes patients’ families at every level of care. Byock emphasizes the significance of the familial role in a patient’s comfort, as well as the ripple effects of a single individual’s illness on loved ones and their network of relationships. “Whenever one person gets a serious diagnosis, everyone who loves that person shares in the illness. It’s a family and community issue.”

Chang, for one, can attest to the need for a system like Whole Person Care. “Looking back, I can’t remember the past decade because I was so busy helping everyone around me,” she says.

When asked what advice she would give to those caring for a family member or spouse dealing with a serious illness, Chang emphasizes the importance of self-care and finding community support in whatever form that might take. Remember that “it is OK to think about yourself and to take care of yourself,” she says. “Seek out groups to share with and to get emotional support. I only did this toward the end when I started reading about and writing to people on the pulmonary fibrosis foundation website. Those forums saved my life.” She also encourages folks in similar positions to consider their options, including daycare, homecare and facilities, and weigh the pros and cons of each.

Byock also encourages those faced with these situations to manage their own health: “People can experience wellbeing even in the midst of serious illness.”

Complete Article HERE!

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02/14/18

Veteran? Terminally Ill? Want Death With Dignity? That Could Get You Evicted.

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By JoNel Aleccia

California voters passed a law two years ago that allows terminally ill people to take lethal drugs to end their lives, but controversy is growing over a newer rule that effectively bans that option in the state’s eight veterans’ homes.

Proponents of medical aid-in-dying and residents of the Veterans Home of California-Yountville — the largest in the nation — are protesting a regulation passed last year by the California Department of Veterans Affairs, or CalVet, that requires that anyone living in the facilities must be discharged if they intend to use the law.

That’s a position shared by most — but not all — states where aid-in-dying is allowed. As more U.S. jurisdictions consider whether to legalize the practice, the status of terminally ill veterans living in state-run homes will loom large.

“It would be a terrible hardship, because I have no place to go,” said Bob Sloan, 73, who suffers from congestive heart failure and other serious cardiac problems. He said he intends to seek medical aid-in-dying if doctors certify he has six months or less to live.

“I’m not going to be a vegetable,” said Sloan, a Vietnam War-era veteran who moved into the Yountville center five years ago. “I’m not going to end up living in so much pain it’s unbearable.”

A CalVet official said the agency adopted the rule to avoid violating a federal statute that prohibits using U.S. government resources for physician-assisted death. Otherwise, the agency would jeopardize nearly $68 million in federal funds that helps run the facilities, said June Iljana, CalVet’s deputy secretary of communications.

California is not alone. Three other states where aid-in-dying is legal — Oregon, Colorado and Vermont — all prohibit use of lethal medications in state-run veterans’ homes.

In Montana, where aid-in-dying is allowed under a state Supreme Court ruling, officials didn’t respond to multiple requests about whether veterans would be able to use the law in the residences. However, Dr. Eric Kress, a Missoula physician who prescribes the lethal medication, says he has transferred patients to hospice, to relatives’ homes, even to extended-stay hotels to avoid conflict.

In Washington, D.C., where an aid-in-dying law took effect last summer, the Armed Forces Retirement Home won’t assist patients in any way. Those who wish to use the law would be referred to an ethics committee for individual consideration, spokesman Christopher Kelly said in an email.

Only Washington state has a policy that allows veterans to remain in government-run residences if they intend to ingest lethal medications.. At least one veteran has died in a state-run home using that law, said Heidi Audette, a spokeswoman for the state’s Department of Veterans Affairs.

Paul Sherbo, a spokesman for the U.S. Department of Veterans Affairs, said the choice is up to the states.

“VA does not mandate how states comply with federal law,” Sherbo said in an email. “There are a number of ways individual states can choose to handle such situations and still be in compliance.”

To date, none of the 2,400 residents of California’s veterans homes has formally requested medical aid-in-dying, said Iljana. That includes the more than 900 residents of the Yountville center, located about 60 miles north of San Francisco.

“We would respectfully and compassionately assist them in transferring to a hospice, family home or other location,” Iljana said in an email. “We will readmit them immediately if they change their minds.”

But Kathryn Tucker, executive director of the End of Life Liberty Project, an advocacy group that supports aid-in-dying, said that CalVet is interpreting the federal regulations too broadly and denying terminally ill veterans the right to choose a “peaceful death” through medical assistance.

“Nothing exists in the federal statute’s language that would prohibit a resident from receiving aid-in-dying services at state homes, so long as they are not provided using federal funds or employees,” she said.

Ed Warren, head of the Allied Council, a group representing veterans at the Yountville site, co-signed a letter to CalVet officials protesting the ruling.

“My point of view is that it is inhumane to expect people in the last stages of dying to go through the hullabaloo of leaving their homes,” he said.

In Washington state, a 60-year-old man diagnosed with terminal chronic obstructive pulmonary disease, or COPD, died in June 2015 after ingesting lethal drugs at the Washington Soldiers Home in Orting, where he lived.

“It was all done very much in the open,” said Chris Fruitrich, a volunteer with the group End of Life Washington, which assisted the man.

There has been no indication that the policy jeopardizes the nearly $47 million the agency receives each year in federal funds, said Audette, the state VA spokeswoman.

In California, additional protests have centered on allegations that CalVet suppressed information about the aid-in-dying law.

Critics at the Yountville home contend that CalVet passed the discharge rule quietly, with little public input. Then the agency refused to broadcast a public meeting about medical aid-in-dying on KVET, the center’s state-run, closed-circuit television station.

Iljana said the Aug. 21 meeting, led by Tucker and Dr. Robert Brody, also a supporter of aid-in-dying, violated state rules that prohibit using public resources to promote political causes.

“Free speech is great and criticizing the government is great, but not using the government’s own resources and paid staff to advocate for a change in the law,” Iljana wrote in an email to prohibit the broadcast.

That decision, however, prompted Jac Warren, 81, who has been KVET’s station manager for eight years, to resign last month in protest, citing censorship.

“What is at issue is whether a state may completely suppress the dissemination of concededly truthful information about entirely lawful activity,” Warren wrote in an email to CalVet.

The hour-long meeting, attended by about 50 people, was not propaganda, Tucker said, but “an educational event with information provided by an attorney and a physician who both specialize in their respective fields in end-of-life care.”

Bob Sloan, who works as an engineer at KVET for a $400 monthly stipend, disagreed with the decision not to broadcast the meeting on the system that serves residents of the Yountville home.

Sloan said he knows other residents who would like to be able to use California’s aid-in-dying law if their illnesses progress.

“The only other option that people have in this state is committing suicide,” he said. “If I can’t find some way of doing it legally, I’ll do it illegally.”

Complete Article HERE!

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02/12/18

Doulas provide compassionate end-of-life care at North Hawaii Hospice

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North Hawaii Hospice Volunteer Coordinator Bobbi Bryant developed an end-of-life doula program for volunteers earlier this year.

By Jan Wizinowich

Since 1986, North Hawaii Hospice has been providing end-of-life care and support for their local community members. The in-home care by their trained staff and volunteers has eased the journey out of life and given support to family and friends left behind.

Recently, through the efforts of Bobbi Bryant, the hospice’s volunteer coordinator, training has been offered to volunteers to become end-of-life doulas, returning to old wisdom and benefits that can be derived from it.

“Caring for the sick and dying before the Civil War happened in the home. It was just a continuation of women raising children. They cared for the elders at the end of their life,” Bryant said.

But with the rise of medical technology, the end-of-life stage was taken out of the hands of the family, and the knowledge and wisdom was lost.

“People were being brought to the hospital to die, and then they were embalmed so we weren’t really caring for people at the end of life. We lost our skills,” Bryant said.

The resurgence of end-of-life doulas are a reflection of the return of birth doulas beginning in the 1970s.

“Midwives to the dying have been around for a long time. It started as a result of the resurgence of birth doulas and midwives. The model transferred to how we can care for people at the end. There was a lack of education around the dying process and when people wanted to start caring for their loved ones, there was a lot fear. The conversation around death had come to a standstill,” Bryant reflected.

Recognizing the need for doula training, Bryant attended a conference on death and dying on Maui last April.

“When I came back, I spent the next several months creating a curriculum and trained 14 people including nurses, an ER doc and health aids,” she said.

The decision to enter hospice care can be difficult, but once made it can free the family and caregiver to focus on the patient.

“If you come for hospice support early, you can have so much support. There’s so much pain and suffering that isn’t necessary,” Bryant shared.

The North Hawaii Hospice team includes a lead, general and vigil doula. Initially, the lead doula meets with the family and the patient to provide information about all the ways they can assist them, and establishes a relationship of trust.

The doula’s role is to provide non-medical comfort and to be a facilitator; both subtle and profound. On a practical level, the doula does whatever needs to be done — offering companionship, running errands, assisting with household chores, providing healthful meals and helping with bathing and personal care.

“You just be there, be grounded and love them. You need a way to get trust from people. As soon as I get there, I get my hands on them. The medicine doesn’t always help. So when they’re in a lot of pain I’m running energy with that pain and helping them to move the pain through, and helping them to relax,” said Rose Riedesel, a hospice volunteer and healing body worker.

But a primary role for the doula is to sit, listen and be aware of what’s happening with the various aspects of the patient’s care in order to act as an information conduit between the medical care team and the patient.

“The doula is an adjunct to the professional people involved. They’ll find out some information that the care team needs to know and they’ll pass that on, or if the family needs some information the doula will pass that on to them,” Bryant said.

Emotional well-being is vital to ease the dying process. A big part of the doula’s role is to encourage the patient to “talk with people about their life and find places of deep meaning; a deep connection in life, the people who meant something to them in their life, the experiences, what their passions were and what their difficulties were. It allows the person to sink into this process of dying,” Bryant observed.

Another role for the doula is to notice any unresolved issues, which can cause anxiety and tension in the patient.

“They listen in the stories for anything that’s unresolved. Sometimes you’ll hear something about a family member who needs to be forgiven. We want that person to have as much relaxation as possible in the end,” Bryant said.

The lead doula also helps the patient and family with a vigil plan that includes the creation of a peaceful space, along with a team of doulas sitting in shifts when the active dying phase begins.

“They help create a beautiful space for the dying person to be in with things such as art, quilts, photos and a certain scent. They ask, ‘Would you like something read to you? Who do you want with you? Can somebody get into bed with you?’” Bryant said.

After the patient has passed, the doula assists the family in making arrangements, and follows up with them.

“The doula assesses how to help the family at that time and backs out. In a couple of days, they give the family a call and ask to come and talk about what happened, maybe a beautiful touch or an interaction before the person actually stopped speaking,” Bryant said.

Just as with the birth process, dying is a time of loving connection.

Complete Article HERE!

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02/9/18

Sitting With Silence in End-of-Life Cancer Care

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Sometimes compassionate silence can be more effective than action when caring for a terminally ill person.

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The capacity to bear witness and respond empathically to a dying person’s suffering is inherent in end-of-life care. Holistic, relationship-centered, compassionate care is the hallmark of palliative end-of-life care.1 Yet, simultaneously, researchers have found medical training sometimes ill-equipped in preparing clinicians for the range of concerns and emotions expressed by dying patients and their families. Healthcare professionals report lacking skills in psychosocial and spiritual care of dying people, resulting in high levels of moral distress, grief, and burnout.1 Similarly, Tornoe and colleagues found “western society’s fast-paced healthcare environment conditions us to view death as a physiological event and a failure rather than a natural part of the human lifecycle and a second passage of a life.”

Modern medicine with its emphasis on cure frequently discovers itself struggling with an array of challenges in end-of-life care. Studies on the influence of compassionate silence in end-of-life care have indicated that clinicians’ focus solely on “doing” may actually be inappropriate at times and inhibit their ability to effectively address and meet the needs of the person who is terminally ill. A prominent theme was that the “do, fix, and hopefully cure” mandate in modern medicine may not be appropriate at the end of life and, in fact, may need to be balanced with the quality of being present with those who are suffering.1 Being “present” to patients who are nearing death therefore entails that clinicians possess a certain comfort level in terms of “sitting with the silence” and offering the “gift of presence.”

The Landscape of Silences

The research of Back and colleagues outlined 3 types of silences that can manifest between patients and clinicians in the clinical encounter: awkward, invitational, and compassionate. In regard to awkward silences, they write, “silence most often feels like it is dragging on too long when a well-meaning clinician thinks he should be ‘using silence.’ While we recognize that new skills have a learning curve before they can be performed smoothly, we also think that the problem with a directive to stop doing something is unlikely to produce the quality of silence that is actually therapeutic.”

Invitational silences are often intentional and used to evoke certain thoughts or feelings from the patient in an attempt to engender further dialogue and reflection. “The clinician deliberately creates a silence meant to convey empathy, allow a patient time to think or feel, or to invite the patient into the conversation in some way. While we recognize that these silences are tremendously valuable, we also note that these silences are often described as a kind of holding, which has a stage-setting, expectant quality,” explained Back. Invitational silence mentored by mindfulness can be effective in heightening patients’ awareness of the moment and help them observe their feelings and thoughts in noncritical or nonjudgmental ways. Conversely, mindfulness and the clinician’s ability to “quiet the mind” may also help to free one from distractions that might preclude attentiveness to the present moment. The clinician has to shift his or her thought from a narrative mode to one a patient perceives as more empathic or compassionate.

Although minor attention has been given to compassionate silences, researchers recently have taken note and underscored its significance in end-of-life care. Rooted in contemplative practices, compassionate silences encompass a way of being in the world and with the dying that cannot be contrived nor forced by clinicians. “Compassion in contemplative traditions is transmitted through a quality of mind … and is not a tool to be used with a specific set of indications and meanings,” Back explains. In another study conducted with hospice nurses and pertinent to the practice of consoling presence, Tornoe and colleagues found that embracing the silence demanded a mental shift from a focus on doing something for the patient to being with the patient. Compassionate silences, therefore, should never be understood as a means or device in which to create therapeutic relationships. The clinician’s ability to empathize and “join with” the suffering of the dying fosters rapport. Being present in the moment elicits openness in allowing our humanity to speak. Compassion for the other emerges naturally and freely from within. The ability to abide compassionately, amidst silence in end-of-life care and simply be provides depth and soul to the patient-clinician encounter. Clinicians who developed the ability to maintain stable attention and emotional balance, and are naturally comfortable expressing empathy and compassion can spontaneously achieve compassionate silences.

Conclusion

Mindfulness meditation, contemplative practices, and centering prayer are proven to help clinicians cultivate empathy and develop “consoling presence.” Although further research is needed, studies have clearly demonstrated the positive influence of these techniques in promoting a way of being and quality of mind that is crucial to end-of-life care. Whether meditative practices enhance empathic behavior is not known; however, evidence suggests that meditation has a positive effect on factors known to influence empathic mental processes.

Complete Article HERE!

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02/8/18

Too many patients ‘die badly’ — 5 things to know

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by Megan Knowles 

When states accept medical aid-in-dying practices, physicians risk becoming complicit in covering up the failures of their profession — particularly allowing patients to die badly, Ira Byock, MD, palliative care physician and CMO of Torrance, Calif.-based Providence St. Joseph Health’s Institute for Human Caring, argues in a STAT op-ed.

“Americans are rightly outraged by the mistreatment their dying loved ones commonly receive,” Dr. Byock wrote. “People deserve state-of-art treatments for their maladies as well as expert attention to their comfort and inherent dignity all the way through to the end of life. Both are necessary; neither alone will suffice.”

Here are 5 things to know about the article.

1. Although physicians do not want their patients to die, they must realize there comes a point when more medical treatments do not mean better care for patients. Additionally, patients’ family members and care givers must recognize their complicity in overtreating their loved ones.

2. In addition to causing patients unnecessary suffering during end-of-life-care, overtreating patients contributes to increased rates of moral distress, burnout, depression, addiction and suicide in physicians, Dr. Byock wrote.

3. Dying badly in the U.S. is most evident in university-based referral centers. Only 23 percent of incurably ill patients at UCLA’s cancer center were referred to hospice care before they died despite the American Society of Clinical Oncology’s recommendation for hospice care as a best practice, according to a study published in the Journal of Oncology Practice.

4. A separate study found UCLA patients with cancer regularly received excessive radiation treatments to tumors that had spread to their bones. Out of 54 patients who met criteria for single-dose treatment under appropriate clinical guidelines, only one patient was given the recommended one dose of radiation. Forty-two patients were prescribed 10 or more doses, which indicates a taxing treatment regimen.

5. To help keep patients from dying badly, medical leaders can draft public policies to fix longstanding flaws in clinical training, monitor members’ practices for indicators of quality end-of-life care, persuade hospitals to launch strong palliative care programs and work to implement regulatory reform to increase the minimum number of staff members in nursing homes while revoking the licenses of facilities that continually fail to meet residents’ basic needs, Dr. Byock wrote.

Complete Article HERE!

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02/7/18

Advance Directive: Ensure End-of-Life Wishes Honored

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Paperwork including a living will and health care power of attorney can convey your treatment preferences if you are ever unable to make medical decisions for yourself.

By Mary Kane

As a nurse, Kim Von Asten of Dousman, Wis., knows it’s important to document how you want to be cared for at the end of your life, or when you can no longer speak for yourself because of a major illness or accident. She has seen too many families agonizing at a hospital bedside, trying to decide whether a loved one would want to be taken off life support.

But a few years ago, she realized she had multiple copies of her own advance directive “just laying around the house.” During routine visits, her doctor would ask if she had one. “I’d say ‘Well, they’re at home somewhere and I have no idea where I put them. Just give me another copy,’” says Von Asten, 52. “Then I’d fill out that copy, and who knows where I’d end up putting it. I finally thought to myself, if something ever did happen to me, I couldn’t find them, and my family would never be able to find them.”

Like Von Asten, you may think you’ve done your duty by filling out an advance directive listing your preferences for end-of-life care, such as whether you want aggressive treatment or just pain management, and naming a relative or family friend as a health care agent to express your wishes. But that may not be enough. You still need to make sure your paperwork will translate into reality. That means ensuring that your family fully understands your wishes, updating your directive regularly and making the document easily accessible to those who need it.

“People think that ‘Well, because my family knows what I want, I’m covered,’ ” says Judith Schwarz, clinical director of End of Life Choices New York, an advocacy and counseling agency. “But that’s often not the case at all.” If you haven’t created an advance directive or named a health care proxy, or your loved ones can’t find your directive in an emergency, you run a higher risk that your wishes won’t be honored. “Once you get caught up in the treatment train, it’s hard to get off,” Schwarz says. In an emergency room, she says, “the default position is to treat first and ask questions later.”

Sharing Your Wishes

If you don’t already have an advance directive, create one now—and share it widely. An advance directive, which usually refers to a living will and a health care power of attorney, should document your preferences for medical treatment in an accident or at the end of your life, plus name a health care agent to make decisions on your behalf if you’re incapacitated. Find a form for your state in the advanced care planning section of the National Hospice and Palliative Care Organization or at aarp.org/caregiving (type “advance directive forms” in the search field).

When you’ve completed your advance directive, make multiple copies, says Schwarz. Give them to family members and all the providers on your medical team. Keep your copies where they can be easily located. Paramedics often are trained to check a refrigerator door for a do-not-resuscitate order—so if you have one, tape it there. “Your documents are like nuggets of gold to caregivers left wondering, ‘How do I do this well?,’ ” says Paul Malley, president of Aging with Dignity, a nonprofit that advocates for end-of-life planning. “You want to tell as many people as possible that you’ve made your decisions and where your records are kept.”

If you’re a caregiver for someone who is seriously ill or frail, ask a health care provider about a physician order for life sustaining treatment, or POLST, form, in addition to the directive. The POLST form is a medical order created with a health care provider so that medical personnel know someone’s wishes in an emergency situation. Your loved one can specify if he or she wants resuscitation or other life-sustaining treatment, hospitalization, comfort care or something in between. Search for state-specific information.

Make sure your loved ones are clear about your wishes and willing to carry them out. Start by holding a family conversation that includes as many people as possible, including adult grandchildren, says Marian Grant, a palliative care nurse practitioner and senior regulatory adviser with the Coalition to Transform Advanced Care, a Washington, D.C., advocacy group. State your preferences: Do you want to be kept alive on a ventilator? Are you willing to live in a nursing home?

Once you’ve shared your preferences, ask a trusted relative or friend to be your health care agent. Select someone who can handle the task, and discuss it in depth. “The appointment is only as good as the conversation,” Schwarz says. “What you want is someone who will assume the significant responsibility and decide as you would want, rather than as the daughter who doesn’t want her mom to die.”

Next, ensure your documents will be accessible when they’re needed. Despite technological advances, you can’t assume your paperwork will be recorded electronically with your medical records or shared with your doctors. Methods for storing directives vary by state and by hospital system. In many cases, you’ll need to physically present your paperwork. Keep a copy in your wallet or car, or download it on your phone.

You can store your directive electronically at the U.S. Living Will Registry or DocuBank and allow health care providers to access it. Or create and store an advance care plan using MyDirectives, a free online service. You can use it to notify your health care agent, and he or she can accept or decline the responsibility. You can also share a link to your plan with caregivers and relatives. Von Asten decided to use MyDirectives because she could better organize her documents and keep them in one place.

To be sure your wishes are honored, you or your health proxy also will need to be proactive, double-checking with surgeons, nurses and paramedics to be sure they have your directive or other documents in hand through every phase of your treatment. In one instance, a daughter discovered that her father’s advance directive failed to accompany him when he was moved to a different hospital floor, says Malley.

Update your directive regularly, and give a copy to all those who had the prior version. And follow the updating advice of Charles Sabatino, an elder law expert with the American Bar Association, by using the “five Ds”: a new decade of life, death of a family member, divorce, new diagnosis or a medical decline.

Complete Article HERE!

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02/4/18

His wife of 73 years was dying. A ‘death doula’ eased the way for her and his family

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Caretaker and end-of-life doula Lisa Jeansonne helps people who are dying stay in their homes rather than having to go to a hospital.

Jack Zito, 96, and Lisa Jeansonne, an end-of-life doula and caregiver, play Scrabble at Zito’s kitchen table on Jan. 24, 2018 in Sister Bay, Wis.

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John “Jack” Zito, 96, doesn’t give up easily. When his wife of 73 years was facing her final days last year, Zito put every ounce of energy and effort he could muster into caring for her so that his beloved Noni could die at home.

Noni died in May; she was 95. It was about a year before she died, as her health was rapidly deteriorating, that Lisa Jeansonne began helping Zito. An experienced end-of-life caregiver, Jeansonne’s gentle presence and calm demeanor was the balm Zito sought as he cared for his ailing wife.

Zito’s eyes moistened and he dabbed at them with a handkerchief in a recent interview, remembering his wife and the care Jeansonne lovingly gave her.

“That is why Lisa is here now,” Zito said. “She looks after me. When that time comes, she’ll be here to help me, too.”

Jeansonne would go on to receive specialized training from her employer to become an end-of-life doula — a professional who can provide comfort to a dying person, and support to that person’s family. It’s part of a growing recognition across Wisconsin and nationally that caring for the dying is a skill — for some, a calling — and can be a pillar for family members.

For Zito, Jeansonne’s care for Noni, given name Margaret, helped forge a lasting emotional connection.

Jack Zito, 96, looks at photographs of his children playing with a young Lisa Jeansonne, who now serves as caregiver for Zito and previously took on the role as an end-of-life doula for his wife, Noni, so she could die at home.

A World War II veteran and retired Chicago business owner, Zito has the strong, clear voice of a younger man. He enjoys puttering about the kitchen cooking, verbally sparring with Jeansonne as they duel in Scrabble games and “letting her” drive when the duo completes household errands. Noni’s death has left a chasm in Zito’s heart and Jeansonne’s companionship partially fills the void.

The Zitos literally landed in Door County after summers of sailing the Great Lakes when they retired to their favorite boating site. They immersed themselves in church and community activities in northern Door County from their home nestled in the woods near Sister Bay. Noni avidly painted watercolors of the area’s fabled scenery and wildlife, while Zito happily assumed the housework and cooking duties.

For decades their health was good and the couple relished visits from family and hosting barbecues with friends.

Old age began to catch up with the Zitos in 2016 when Noni was diagnosed with congestive heart failure. Zito said he knew the end was coming, but he was determined to care for Noni so that she could die in their cherished home in the northern Door County woods.

The pressure to care for his dying wife was fatiguing and it was emotionally draining to watch Noni decline, he said. Although Zito insisted to his children, who are scattered across the nation, including in Door County, that he didn’t need help, his family arranged for a part-time caregiver from Advocates In-Home Care in Sturgeon Bay.

Since Zito was adamant he alone could care for his wife, he devised a plan. When the hired caregiver arrived for the first day of work, he was going to be friendly, and explain he had everything well managed.

That plan slowly melted when Jeansonne knocked on Zito’s front door about two years ago. Her handshake was firm and she looked him in the eye while explaining her role to help him.

Lisa Jeansonne, an end-of-life doula and caregiver, waters plants at 96-year-old Jack Zito’s Sister Bay residence on Jan. 24, 2018.

Later that day, a bond began to develop as Jeansonne and Zito sipped coffee at the kitchen table while Noni slept. Lisa said to Jack, “I know you. Your kids are about the same age as me and we used to play together in the summer.” Lisa refreshed his memory with tales of summers boating, swimming and fishing off of the Ephraim marina with his kids.

Zito’s eyes filled with tears as he told the story of that day, but he was also smiling. From the very first day, Zito said, he could see that Jeansonne’s quiet presence and easy manner was exactly the help he and his wife needed.

“That day, I saw how good Lisa was with my Noni, and, why she was practically like family,” Zito said.

New movement to die at home

While Jeansonne was hired as a caregiver, she also assumed a role that she has fulfilled dozens of times during earlier positions with families — giving specialized, attentive care to a family member who was dying.

The care Jeansonne provides isn’t medical. Rather, it focuses on doing whatever is needed to ensure the dying person is comfortable. It’s a holistic approach that offers emotional, spiritual and physical support to clients and families.

Jeansonne and other caregivers at Advocates In-Home Care are trained as end-of-life doulas. It’s part of a new movement to enable the dying to remain in their homes.

Similar to a doula who cares for and supports a woman through her pregnancy, an end-of-life doula supports a patient and the family through the dying process, said Marggie Hatala, a registered nurse and end-of-life doula in Door County.

Hatala also is a certified trainer for Doulagivers End of Life Elder Care Training Program and founded Doula Givers of Door County more than a year ago to offer free seminars about end-of-life care and also the training for certification as an end-of-life doula — or, as it is sometimes known, a “death doula.”

The end-of-life doula is there to listen and develop a relationship with the patient that transcends the illness and may last days, weeks or years depending on the prognosis, Hatala said.

“Dying and death has become institutionalized, that everyone dies in a hospital or nursing home,” Hatala said. “Most people want to die at home and they don’t want to die alone.

“People are awakening to the fact that there is a way to have a good death.”

About 25 percent of the Door County population is 65 years or older, according to the state data from 2015. In the same year, about 12 percent of the state’s population was 65 years or older.

Based on population trends, Wisconsin’s elderly population in the state will grow 72 percent by 2040, according to the Department of Health Services.

“This is happening throughout the United State — as the baby boomers are aging, there is going to be a growing need for in-home care,” Hatala said. “Door County already has a large aging population that wants to grow old in their homes.”

A former hospice nurse, Hatala said she was frustrated by being limited to providing medical care when she saw that patients wanted and benefited from having a person consistently with them as they were dying.

“I felt a true need to remain with a patient and their family without any agenda, simply to be present to them,” Hatala said. She became trained as a doula and later completed the certifications to teach and train others after she moved to Door County about five years ago.

In 2017, Hatala’s first class of caregivers from Advocates In-Home Care, including Jeansonne, became certified through Doulagivers of Door County program. Besides training to provide physical, emotional and spiritual support to the dying and their families, doulas also receive training to support family members following the death.

End-of-life doula care is paid for privately unless there is a portion of the service that is covered through the caregiver services provided to a client. The cost for end-of-life doula care is about $20 an hour.

Death can be frightening for an ailing patient and it also raises anxiety for family uncomfortable with death, said Mary Beth Williams, a hospice nurse and caregiver with Advocates In-Home Care. “Most people do not want to die alone, and they want to die at home where everything is familiar with people that they love.”

Doulas work in tandem with medical professionals and hospice programs to provide care that integrates the emotional, spiritual and physical support clients and families seek. It’s different from being a hospice nurse, Williams said, because while the nurse in hospice care focuses on a patient’s medications, a doula’s role is to provide a patient with comfort.

“As a doula, you’re aware of the pain (a patient has) and the medications they are taking, but a doula finds other ways to provide comfort; for example, if someone is short of breath, a fan on their face or elevating their head might be beneficial,” Williams said.

Hatala also conducts online training classes for people throughout Wisconsin.

The participants in Hatala’s online classes are as diverse as the regions of the state where they live. They include a paralegal from Sheboygan, a retired minister from Manitowoc and a practitioner of alternative pain management therapies from Green Bay.

They shared similar stories of being drawn to doula care after exposure to aiding the dying and finding it was a fulfilling and gratifying experience.

The Sheboygan paralegal, Shannon Shaurette, was exposed to hospice care while her father was dying from cancer seven years ago at a Milwaukee hospice.

“The hospice workers were beyond amazing to my dad, my mom and the rest of our family … and after my father died I thought about volunteering at a hospice, but the timing wasn’t right,” Shaurette said.

A friend from Vermont told Shaurette about the growing movement to die at home with the support of an end-of-life doula. She started the classes because she wanted “to be able to bring the same feeling of comfort, peace and love to others, as the staff at the hospice did for my family,” she said.

Jack Zito, 96, sits at the kitchen table in his Sister Bay home on Jan. 24, 2018, while talking with Lisa Jeansonne, an end-of-life doula and caregiver, who currently helps Zito with chores and visits with him three times a week.

A way to a ‘good death’

For Zito, the care Jeansonne gave his wife made her “almost family.”

Prior to the day Noni died, she had been talking and sharing memories with family who had gathered at the Zito home. When she slipped into a deep sleep May 21, family members stayed at her side, holding her hand throughout the day. Zito was gone for a few minutes to make more coffee in the kitchen. When he came back, Noni had died.

“It was very peaceful,” he said. “People were with her, she was holding her son’s hand and she had a smile on her face.” Zito said he will be “eternally grateful” for the hospice care and Jeansonne’s attention to details that provided Noni and his family additional comfort.

Since Noni’s death, Jeansonne has continued to provide part-time care for Zito.

“I do the cleaning and we do grocery shopping, trips to the library or the hardware store together. We like to play Scrabble and Jack loves to read,” she said. “Jack can pretty much take care of himself, but I’m here for the help he does need.”

When Zito’s time arrives for his final journey, Jeansonne said, she will be there to help him and his family.

“He’s a wonderful man and adored his Noni. It’s a gift I can give him to make him as comfortable as possible,” she said.

Learn more about the end-of-life doula program

To learn more about Doulagivers of Door County, call Marggie Hatala at 920-495-1566 or check the website www.marggiehatala.com

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