Have You Prepared Your Advocates?

— Estate planning includes naming advocates in your key health and estate documents. But are your advocates truly prepared to make decisions on your behalf? Our expert shows what you need to do.

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Going through the process of completing your estate planning documents is not an easy process. Working with an attorney to determine what documents you need, how you want the language written so that your assets are handled and decisions are made the way YOU want them, and choosing the best advocates to carry out those instructions can be very involved. No wonder it is a task that many people put off doing – it can be overwhelming!

Common Documents With Named Advocates

The most common estate planning documents that individuals have drafted (and that will require advocates to be named) are the following:



Most clients are so relieved when their documents have been drafted; it is a huge weight off their shoulders to have so many important decisions made and in place. It feels satisfying to have the binder of documents drafted by the attorney in hand and completed.

Perhaps if you are even more “on the ball,” you follow through and get copies of your documents to your financial advisor and update your asset titling and beneficiaries according to the funding instructions provided by the attorney. If you have done that, you are ahead of the majority of clients, most of whom take the big binder home and file it away in a safe place and consider their estate planning completed! But is it?

Have you taken the final step and communicated to those you have chosen as your advocates that you have named them in your documents?

The Importance of Communicating With Your Advocates

It is not uncommon for people to name others as future advocates for them in their legal documents, but not to communicate to them that they have been named. If you’ve ever been in the shoes of being that named advocate, and getting that “surprise” call that you suddenly need to make a life and death decision about someone’s health treatment when you had no idea you were named as their health care advocate and had not had conversations with them regarding their wishes around end of life treatment, you might think differently about having those proactive conversations.

It is extremely important to take this last step, and not only communicate with your advocates that they have been named in your documents but also give them the key information that they will need to fulfill your wishes.

Here is the key information you need to share:

Patient Advocate/Health Care Advocate:

  • Drug allergies
  • Current medications (or where to find your medications list)
  • Your primary providers, your wishes on Code Status (i.e. DNR or full Code), and where your estate planning documents are located
  • Your past surgical history
  • Whether or not there is metal anywhere on your body
  • What your wishes are for end-of-life care and treatments (i.e. aggressive vs. comfort treatment)
  • Plans for future care and any professional relationships and resources that can be used to assist the advocate in their role (social workers, Geriatric Care Managers, etc.)

Durable Power of Attorney/Successor Trustee:

  • Contact information for your professional advisors and, if possible, an introduction to those professionals.
  • Instructions on where to find an “open me first” document (ex. Personal Financial Record System) that details your financial life (bank accounts, investment accounts, insurance policies, government benefits, employer benefits, etc.)
  • Where to find your estate planning documents and a review of your Trust (especially for your successor Trustee, so they have a heads-up on how they might be managing your assets)
  • An overview/general conversation about your wishes regarding handling your assets for future care and your values around money.

Executor/Advocate:

  • Contact information for your professional advisors and, if possible, an introduction to those professionals.
  • Instructions on where to find an “open me first” document (ex. Personal Financial Record System) that details your financial life (bank accounts, investment accounts, insurance policies, government benefits, employer benefits, etc.)
  • Instructions on where to find your Letter of Last Instruction document outlining your wishes for after death.
  • Where to find your estate planning documents, especially your Last Will & Testament, which will be the guiding document for your Executor.
  • An overview/general conversation about your wishes regarding after-death arrangements, about your Will, and how you would like your assets handled post-death, especially if there is no Trust for assets to flow to.

The more information you can share with your future advocates, the better prepared they will be to make the decisions you would want them to make on your behalf should they ever need to serve. An advocate’s job is to be your fiduciary, which means to make decisions in your best interest; without the benefit of having full information on you and your situation, you make it almost impossible for them to do their job to the best of their ability.

If you have taken the time to draft your estate planning documents, our best advice is to complete the process by fully preparing your advocates to serve in your best interest – they’ll be glad you did!

Complete Article HERE!

Hospice care has a big problem


A terminally ill hospice resident sits with a music therapist in her bed in Lakewood, Colorado.

By JOANNE KENEN

A LITANY OF WRONGS — A number of years ago, when I had a fellowship to write about end of life care across the United States, a geriatrician in California told me, “There are no do-overs in death.”

A group of prominent physicians who specialize in end of life care think it may be a do-over time for hospice. Or at the very least a gut-check. Once a movement, hospice is now an industry dominated by publicly-traded companies and private equity firms, and it’s been the subject of critical government reports and withering exposes, including a New Yorker-ProPublica investigation of the “for profit hustle.” Today, with half of all Americans dying in hospice care, some doctors believe its challenges are in urgent need of fixing.

In a six-page “call to action” recently published in the Journal of Palliative Medicine, 325 prominent doctors in this field wrote that “in recent years, we have observed an increasing prevalence of serious deficiencies in hospice care and high variability in quality of care.”

Instances of “poor care,” they said, are “increasingly common.” The signatories (some of whom are retired) include pioneers in the field, including two-thirds of the living former presidents of the American Academy of Hospice and Palliative Medicine, the professional society for these physicians.

Ira Byock, a long-time hospice and palliative medicine physician who was the lead author, told Nightly that the Academy and the main hospice trade group should do more to set quality standards and promote transparency. That would help government regulators focus on what matters to patients and families, rather than generating a lot more administrative hassles.

The essay in the journal cited a litany of wrongs — not enough physician involvement in patient care, unmanageably large nurse caseloads and inadequate, interdisciplinary care teams. The nurses, doctors, social workers, chaplains and others who are the core of hospice care, which generally takes place in patients’ homes, are overworked or not properly trained. They also said some hospices don’t have the required backups for emergencies, such as intense pain or difficulty breathing that families can’t take care of themselves. That means families dial 911, and patients end up back in the very hospitals that they chose hospice to avoid.

Some issues the essay cites reflect challenges in U.S. health care across the board — like nursing shortages after the pandemic. Others reflect the changing nature of hospice ownership and the Medicare payment system. The authors want the statement to be a roadmap as physicians negotiate with employers so they can provide consistently good care.

Ben Marcantonio, interim CEO of the National Hospice and Palliative Care Organization, the trade group, told Nightly that a small number of hospices that have committed “actually fraudulent behavior” have tarnished how hospice overall is perceived. The industry, he said, has also called for federal resources to educate health providers in the field, which will help with both workforce shortages and quality. And they’re working with the Center for Medicare Services on quality measures “that really do put the focus in the right place.” They also want Medicare to pay hospices more.

Dr. Holly Yang, president of the American Academy of Hospice and Palliative Care and a practicing palliative care physician in San Diego, said she doesn’t think hospice’s challenges revolve so much around nonprofit vs for-profit ownership, but about the Medicare hospice benefit itself. A lot has changed since Congress added hospice to Medicare in 1982 — how we age and die, and where and how families live and work and who is available to stay home and care for a dying relative.

The hospice benefit “has not changed with the times,” said Yang, who also trains upcoming hospice and palliative care doctors. Hospice in its early days was very focused on cancer, which had a more predictable and shorter course than it does with today’s treatments. And more people in hospice have conditions like dementia or congestive heart failure, where the trajectory is uncertain. People can live with serious illness for a long time but need support.

For Byock and his colleagues, calls for legislative change aren’t enough, particularly as advocates have been calling for remedies for several years and Congress isn’t racing to comply. Hospice, they say, needs to do more to protect quality, to protect “vulnerable seriously ill people with their families” on its own. There may be no do-overs in death. But maybe it’s time for a do-over of hospice.

Complete Article HERE!

How Gender-Affirming Care Bans Could Impact Hospice Access, Utilization

By Holly Vossel

Hospice providers are growing increasingly concerned about how state laws related to transgender rights may impede access to their services among LGBTQ+ communities.

A rash of states have recently passed legislation to ban the delivery of gender-affirming health care, including Idaho, Indiana, Mississippi and Tennessee, among others.

What’s happening in these states has caused mounting concern around access to quality hospice care for LGBTQ+ individuals, according to Kimberly Acquaviva, social worker and professor at the University of Virginia’s School of Nursing.

“It’s not difficult to imagine that transgender individuals living in those states may be hesitant to seek hospice care,” told Hospice News in an email. “If they receive hospice services in an inpatient facility like a hospice house, will they be addressed by their name and supported in their efforts to dress and groom themselves in a manner that affirms their gender 100% of the time? I’m not confident the answer to either question would be ‘yes.’”

Currently, 19 states in the United States have enacted bans or restrictions on the delivery of transgender health care, according to a recent report from The British Medical Journal (BMJ). Out of these states, 10 have already enacted such laws. Other states have similar laws that will take effect beginning July 1, in October or in January 2024, the BMJ report indicated.

Approximately 560 bills have been introduced thus far in 2023 across 49 states nationwide that include legislation related to transgender rights, according to the most recent data from the Trans Legislation Tracker. Around 83 of these laws have passed, 364 are actively in consideration and 113 were blocked, the data showed.

This compared to 26 bills out of 174 pieces of proposed legislation that passed the prior year, or roughly 15% of those proposed in 2022, the Trans Legislation Tracker reflected.

The volume of legislation that has been mulled or passed limiting transgender rights has been “disheartening” and makes it difficult for hospice providers to improve access and address quality, according to Dr. Noelle Marie Javier, internist at Mount Sinai Health System.

“There are roughly 29 states that do not have anti-discrimination protections in place for the LGBTQIA+ community,” Javier said during a recent American Academy of Hospice and Palliative Medicine webinar. “This number has grown tremendously and exponentially. At the end of the day, the LGBTQIA+ community simply wants to be accepted, supported, respected and treated humanely across the board. We are still dealing with the very same issues that our predecessors have long fought.”

The risks for transgender individuals in violation of current state laws has created health care access barriers for many in the LGBTQ+ community, according to Acquaviva.

“Hospice and palliative care professionals have an obligation to ensure transgender individuals have access to care and are treated with dignity and respect,” Acquaviva said. “If laws at the state level impede access and care delivery that aligns with those obligations, hospice and palliative care professionals need to speak up, speak out, and advocate for changes to the laws.”

Complete Article HERE!

Hospice in Prison Part 2

— An interview with the Pastoral Care Workers

I don’t know ’bout religion
I only know what I see
And in the end when I hold their hand
It’s both of us set free

These are the ending lyrics to Bonnie Raitt’s song “Down the Hall”, an ode to the Pastoral Care Workers who care for their fellow inmates in the hospice unit at the California Medical Facility in Vacaville, California. On last week’s podcast we interviewed the medical director and the chaplain of the prison’s hospice unit (Hospice in Prison Part 1). This week we turn our attention to the inmates.

Pastoral Care Workers are inmates who volunteer time to care for the dying who come from all around California to spend their last days, weeks or months in the prison’s hospice unit, fulfilling a mission that “no prisoner dies alone.”

On today’s podcast we talk with three of these Pastoral Care Workers, Jerry Judson, Jeffrey Maria, and Allan Krenitzky. We discuss with them why they decided to volunteer for the hospice unit, what a day in the life of a Pastoral Care Worker looks like, and among other things their thoughts on forgiveness, redemption, rehabilitation, and compassionate release.

We also had the pleasure to take a walk through the hospice unit garden with Mr. Gerald Hite. He taught us a little about the different flowers and plants, and along the way a little about why he does what he does.

While this is a podcast about volunteers in a prison hospice, I think it also serves as a lesson for us all about how we make meaning to our own lives and define ourselves by not only what we have done in the past, but what we do now. One story that Allen told perfectly sums this up. He said one day his son asked his wife what he does for a living, and his wife said “Papa helps sick people.”

Complete Article HERE!

Hospice in Prison Part 1

— An interview with Michele DiTomas and Keith Knauf

In the early 1990’s, California Medical Facility (CMF) created one of the nation’s first licensed hospice units inside a prison. This 17-bed unit serves inmates from all over the state who are approaching the end of their lives. A few are let out early on compassionate release. Many are there until they die.

Today’s podcast is part one of a two-part podcast where we spend a day at CMF, a medium security prison located about halfway between San Francisco and Sacramento, and the hospice unit housed inside its walls.

We start off part one by interviewing Michele DiTomas, who has been the longstanding Medical Director of the Hospice unit and currently is also the Chief Medical Executive for the Palliative care Initiative with the California Correctional Healthcare Services. We talk about the history of the hospice unit, including how it was initially set up to care for young men dying of AIDS, but now cares for a very different demographic – the rapidly aging prison population. We also talk about the eligibility for the unit, what makes it run including the interdisciplinary team and the inmate peer workers, and the topic of compassionate release.

Afterwards, we chat with the prison’s chaplain, Keith Knauf. Keith per many reports, is the heart and sole of the hospice unit and oversees the Pastoral Care Workers. These are inmates that volunteer to work in the hospice unit, serving a mission that “no prisoner dies alone.” We chat with Keith about how hospice in prison is different and similar to community hospice work, the selection process and role of the peer support workers, the role of forgiveness and spirituality in the care of dying inmates, and what makes this work both rewarding and hard.

Part two of the podcast, which comes next week, is solely focused on the Pastoral Care Workers. We interview three of them in the hospice unit and take a little tour of the hospice gardens.

Complete Article HERE!

Hospice and Medical Marijuana

— Helping At The End

By Amy Hansen

 

When the time of passing is close, emotions run high. When hospice if involved, it helps, but the pain of upcoming loss and all the unresolved issues are still left. In the US, people are taught to believe in happy endings. Generations have watched television shows and movies where in 30, 60 or 120 minutes all the issues are resolved and there is a last minute confession and a rebounding moment. Real life is neither as clean or as happy.

Does marijuana help in those final hours? In the moments with palliative or hospice care, anything that can help makes a difference.

Palliative care is medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness.

Hospice care focuses on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life. Hospice is prescribed when a path to cure has come to an end and the focus changes to focus making the patient comfortable until the end. 

Two evidence-based guidelines address the use of medical marijuana in a palliative care setting. The first evidence-based guideline explicitly recommends against the use of medical cannabis as a first or second line option for palliative cancer pain. The guideline suggests that it could be considered in the case of refractory symptoms and with careful consideration of potential risks. The second evidence-based guideline similarly recommends that medical cannabis only be used in the palliative care setting when other treatments have failed, and after consideration of the potential for adverse events and drug interactions.

In study after study, medical marijuana can helps increase appetite, relieve painful constipation, and diminish pain. Hospice focuses on the focus well being, knowing there isn’t a long-term cure. Currently, most science shows medical marijuana manages systems but not resolve an serious ailment or injury.

shallow focus photography of bubble on leaves

Perhaps equally importantly, marijuana is used in the hospice care setting to ease spiritual and existential suffering. Some studies showing an important therapeutic role for patients faced with the despair of a terminal illness, loss of functions, and a lifetime of reflections. A mild euphoria or sense of well-being can ease a patient’s mind, body and spirit as they come to terms with their fate.

In 2019, a study was conducted among hospice professionals. About half of the respondents were nurses followed by administrators and physicians. Regardless of legal status, hospice staff members were overwhelmingly in agreement that medical marijuana is an important tool in supporting their patients.

Though medical marijuana is legal in 40 states, plus the District of Columbia, conflicting federal laws present a challenge for hospice and palliative care programs whose patients are interested in medical cannabis or already using it to manage pain and other symptoms.

The situation is particularly challenging for hospices, which are primarily funded by Medicare. Many hospices say they cannot legally prescribe medical marijuana because it remains a Schedule 1 controlled substance under federal law.

Complete Article HERE!

A good death for a Minnesota woman who championed the right to die with dignity

Gallery: Cheryl Hauser smiles as she looks out the window Friday, Nov. 5, 2021 at her home in Hopkins, Minn. Hauser, who has Alzheimer’s disease, has decided to eventually hasten her death by voluntarily stopping eating and drinking after watching her brother die from it.

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It’s not the dying I mind, Cheryl Hauser used to say.

It’s the leaving.

She left us this month. On her own terms, in her own time; surrounded by as much love, music and kindness in death as in life.

This is her parting gift to us. A chance to talk about the part of life nobody wants to think about.

The end.

“We would sing to her and rub her feet and her hands,” said Cheryl’s daughter, Wendy Longacre Brown, who chronicled those final days as her terminally ill mother voluntarily stopped eating and drinking to hasten the end.< "You're in it together," said Brown, who has worked for years as a death doula, easing the transition from this life to whatever comes next. “There’s a lot of joy and laughter. But there is sadness.”

Cheryl had loved the life that Alzheimer’s was stealing from her.

“She was everything,” her daughter said. “She was someone who could sing in the grocery store aisle, then have a long conversation out in the parking lot with a total stranger.”

But Cheryl knew what was coming. She lost her brother Bill to Alzheimer’s, years before the disease actually killed him.

When she was diagnosed, she knew how she wanted her story to end. When the time came, she would VSED — voluntarily stop eating and drinking.

“When the day comes when nothing matters anymore, I’ll begin,” she told the Star Tribune in 2021. “My brother died of this disease and it was torture. I don’t want that for me and my family.”

Instead of languishing for years in memory care, she chose to spend her last weeks at home in Minnetonka. Friends visited, musicians serenaded her, and her grandchildren pressed her thumb into soft clay to create keepsakes. She sat outside in the sun, surrounded by summer flowers and birdsong.

One of Cheryl’s daughters is a birth doula. The other a death doula. Welcoming us into the world and helping us say goodbye.

“The more that death is part of the conversation and less of a taboo, the more we as a community can be present for one of the two most significant moments in your life,” Brown said. “It’s never too early to start a conversation of what people wish for around their end of life.”

Brown had helped other families through the goodbyes that nobody wants and everyone needs. Now she was the one saying goodbye. Every day, she shared photos and updates on her mother’s condition on cherylhauser.com.

The site started as a way to share news with family and friends. But it also drew strangers, who grieved with them and marveled at their generosity. In a culture that shies away from talk of death, here was a family showing us what dying looks like. Or what dying could look like.

“People often ask, did she have doubts? I can honestly say she did not,” said her husband, David McNally.

VSED is not a swift or simple death and patients in cognitive decline need special care to ensure that they are capable of giving informed consent. But this had always been Cheryl’s plan.

There were moments, as Cheryl was dying, when she would become confused and forget. Her family would sing to her, massage her legs as they cramped from dehydration, and offer her a tiny spritz of water or a cold spoon to hold in her mouth for comfort.

VSED cases are overseen by doctors and hospice staff. Caregivers were with Cheryl to make sure she was comfortable and had medicine to ease any pain or anxiety.

It was a death only possible in a family that talked about the end of life long before they needed to.

“Several times in the journey [in the four years between Cheryl’s diagnosis and death], I would say to her ‘How are you feeling about VSED?’ ” McNally said. “She would say no, I’m good, I’m going to do it. When my time comes, I will do it.”

The couple met when they were 60 and married when they were 70. Sixteen years. That’s all the time they were given. They made the most of their last four years together; traveling, going on adventures and advocating for the right to a dignified death.

Cheryl “was a very outgoing, very joyful person, just an extraordinary personality. She lit up a room,” he said. “She connected with people. She had this uncanny ability, when speaking with people, of making them feel special.”

There were incredibly sad moments, he said, as the disease progressed and her beautiful life started to slip away. Cheryl lost the ability to drive, to play the piano, sometimes she struggled to tell one grandchild from another. In the end, he said, she could do almost nothing for herself without help.

In May, she told her family she was ready.

Cheryl Harms Hauser, who had a smile that could light up a room, died on June 2, 2023. She was 76 years old.

Complete Article HERE!