Month: December 2021

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Why I Decided To Have A Wake For My Dog

“I hated the idea of saying goodbye to our beloved shelter pup in a sterile exam room — she despised vet visits.”

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The end was near.

In her final weeks and months, our old dog, Daisy, had trouble with her legs, struggling painfully to stand up or lay down and occasionally getting her front feet tangled. The vet theorized that she had a tumor on her spinal column, but at her age (16 or so) surgery was too dangerous.

The focus turned to comfort care and the looming question of when.

Then Daisy — always a bit of a neat freak — started losing control of her bowels and bladder. Her hip and leg pain seemed to be worsening. Eyesight and hearing were going. It was clear that she was suffering.

I hated the idea of saying goodbye to our beloved shelter pup in a sterile exam room — she despised vet visits. I also didn’t want to leave her body with strangers, albeit kind ones. After seeing our family through 14 years of good and bad times, I felt a duty to honor Daisy by caring for her body myself.

We booked a home euthanasia appointment with a licensed vet. I started poking around the internet for information on postmortem care.

When the day came, the vet was wonderfully calm and kind. Daisy laid on a cherished blanket taken from my late father-in-law’s house. It was a beautiful day, the March sun melting a recent snowfall, birds chattering in the trees.

She passed so quietly. I’d given myself permission to let it all out, so once the vet confirmed she was gone, I held her and wailed.

Then the work began. It was hard. It was scary. It was terribly sad. But I also felt like I did right by our beautiful friend.

If you have an animal companion you’d like to honor with a wake of your own, here are a few tips I can pass along.

Learn About The Euthanasia Process

The basic order of events is basically the same, whether at home or at the vet clinic. The vet administers a sedative that puts the pet into a deep sleep. Once they’re out, another drug is injected that stops the animal’s heart. And that’s it.

It costs more to have the vet make a house call, but it was totally worth it for us. Daisy fell asleep with the taste of steak in her mouth and with my husband and me at her side. We petted her and whispered in her enormous ears the whole time. Her breathing quickened a bit after the fatal drug went in, then it slowed, then it stopped.

Talk It Over With The Family

We have two kids, ages 4 and 8, who’ve never experienced a loved one’s demise. They knew Daisy was old and would probably die soon, so we explained a couple of weeks prior that the visiting vet would speed her transition to prevent further suffering.

From there, I let them decide how — and if — they wanted to participate. My 8-year-old son preferred to stay out of it. My 4-year-old didn’t want to attend the procedure (a relief), but she helped decorate Daisy’s body with flowers afterward, and gently petted and kissed her as we sat with her that afternoon.

Not everybody wants to get this close-up to death, and that is absolutely understandable.

Get Childcare If You Can

I was fortunate my mom and sister were available to help out that day. We didn’t have to worry about what the kids were up to while we said goodbye, and I think having some extra family at home was a comfort for everyone.

If the kids will be around, consider scheduling the euthanasia appointment for later in the day — that way bedtime won’t be too far off and you can (hopefully) have some space to grieve.

It Won’t Be Gross

There’s a misconception that dead bodies are instantly grotesque, all leaking fluids and lolling tongues. Not true. The body still looks like your loved one. Fur is soft. Ears are floppy. The body stays warm for a while.

The only slightly yucky thing that happened: When my husband hoisted Daisy up to move her body, a little pee dribbled out. Nothing we hadn’t seen before.

You Have Time

After your pet passes, there’s no need to rush. Rigor mortis — the phase of death that causes tissues to stiffen —  takes two to three hours to set in. You have that time to hold your dearly departed, cry, snuggle, say a prayer, whatever you want.

Keep Ice On Hand

Ice keeps the body cool, staving off the beginnings of decomposition. We filled an old plastic baby pool with bags of ice, covered that with a tarp, then put a blanket on top for a cozier look. Daisy laid on the blanket, appearing to be in a deep slumber.

It helped that it was cold in the garage, too — warmer temps require replacing ice as it melts.

Plan For Your Needs

Once the novelty of having a dead dog in the garage wore off, our kids were back to their usual snacking requests.

I hadn’t thought much about the, uh, catering, so I was left trying to arrange meals for people between bouts of tears. Have frozen stuff ready to go, get something delivered, whatever works — just make the plan in advance so you’re not trying to create menus while in the throes of new grief.

Go Easy On Yourself

There’s no wrong way to do any of this. If the idea of an at-home dog wake is bizarre to you, that is totally fine. If some parts sound nice, but others don’t? Also fine. The key is to lock into what works for your family and go from there.

Daisy’s home wake felt like the grieving equivalent of ripping off a Band-Aid. I cried more, and harder, in those 24 hours than perhaps I ever had. But it also helped me, on some primitive level, truly accept her loss.

Taking care of her on her last journey took a little of the sting out of it all. She had a good life — and a good death.

Complete Article ↪HERE↩!

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If you have a child with special needs, here’s how to plan for their life after you pass

by Deborah Nason

  • Are you the parent of a child with special needs? Breaking down planning for their life after you’ve passed can ease the process.
  • Any plan should address money management, self-care and housing.
  • Be sure to work with professionals, such as a financial advisor and an attorney, with experience in the field.

For parents who have a child with special needs, planning for their loved one’s life after they themselves are gone can be overwhelming. Breaking the process down into manageable parts and working with specialized professionals and companies can help.

“The three main structures a family should put in place to provide future protection for their child relate to money management, self-care and housing,” said certified financial planner Michael Beloff, partner and Chartered Special Needs Consultant with Belvedere Wealth Partners in Stamford, Connecticut.

Money management: If the child receives government benefits, such as Supplemental Security Income or Medicaid, parents will usually establish a so-called special needs trust that will shield assets to allow the child continued access to those benefits. The trustee is the person who oversees the funds and other trust provisions not under the child’s control, Beloff said.

Life insurance is essential, said CFP Colin Meeks, founder of Maryland Financial Advocates in Baltimore.

“It’s the cheapest way to fund a trust,” he said. “Because you need to know what’s left over [from your estate] in order to care for the child, it creates that certain bucket of money.”

Self-care: Parents must arrange the services their child will need to live independently or semi-independently (e.g., household management, medication management, doctor visits, personal care, etc.).

These supports may be overseen by a court-appointed conservator (or guardian, depending on the state) who makes all decisions regarding an individual’s financial and/or personal affairs, or by a person with power of attorney, who can make decisions, as well as the individual, Beloff said.

Parents are encouraged to write a “letter of intent,” a common planning tool that serves as a guide for those who will care for the child in the future.

It should cover family history, medical care, benefits, daily routines, diet, behavior management, residential arrangements, education, social life, career, religion and end-of-life decisions, according to the Autism Society.

Housing: With respect to future housing for the child, location is more important than the house itself, said CFP Andrew Komarow, founder of Planning Across the Spectrum in Farmington, Connecticut. Parents should think beyond keeping their loved one in the family home, he said.

“It’s more important to look at the individual,” Komarow said. “What interests and supports do they need?

“Parents may consider retiring to a community that supports the interests of the child.”

There is a trend toward more community-based living, said CFP Gordon Homes with WestPoint Financial in Indianapolis.

“State-administered Medicaid HCBS waiver programs allow people with disabilities to live in a house or apartment,” he said. “The state, in turn, provides staffing for a group of similar residents.

Sometimes, a group of families will purchase a collection of houses or condominiums, Homes said. “We’re seeing people rehabbing houses for roommate living, resulting in neighborhoods of people with special needs,” he said.

Building the team

One important role for a financial advisor is coaching parents on how to approach other family members and friends regarding the care of the loved one with special needs going forward, according to Homes at WestPoint Financial.

“They need these assurances in the conversation: that the government benefits will remain in force, there’s a source of money, there’s a team — such as a care manager, behavioral therapist, personal attendant care giver, guardian, etc. — and there’s a letter of intent,” he said.

The benefits of a special needs trust

  1. Coordinates available resources
  2. Ensures continuation of government benefits
  3. Provides supplemental needs for life
  4. Improves quality of life
  5. Directs final distributions

Source: Colin Meeks, CFP, Maryland Financial Advocates

It’s essential to work with specialists in this type of planning, Komarow said.

“A trust is not just a financial plan,” he said. “Specialty trust companies may be staffed, for example, by social workers who will arrange for daily living needs.”

But parents also have to find attorneys experienced in special needs planning, Komarow added. “Don’t tell them what kind of trust to set up,” he said. “Instead, let them know what you’d like to see happen, and let the attorney tell you what is the right trust for your situation.”

A special needs trust could add an additional $3,000 to $6,000 to a regular family estate plan, depending on its complexity and the area of the country, according to Charles Italiano, assistant director at Westchester Disabled on the Move.

Komarow recommends parents check the websites of the National Elder Law Foundation and Academy of Special Needs Planners for help with finding specialized professionals.

Complete Article ↪HERE↩!

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End-of-life conversations may be helpful to patients and families

By Lola Butcher

In the mid-1990s, psychiatrist Harvey Max Chochinov and his colleagues were researching depression and anxiety in patients approaching the end of their lives when they became curious about this question: Why do some dying people wish for death and contemplate suicide while others, burdened with similar symptoms, experience serenity and a will to live right up to their last days?

In the next decade, Chochinov’s team at the University of Manitoba in Canada developed a therapy designed to reduce depression, desire for death and suicidal thoughts at the end of life. Dignity therapy, as it is called, involves a guided conversation with a trained therapist to allow dying people to speak about the things that matter most to them.

“It is a conversation that we invite people into, to allow them to say the things they would want said before they are no longer in a position to be able to say it themselves,” Chochinov says.

Dignity therapy is little known to the general public but it has captivated end-of-life researchers around the world. Studies have yet to pin down what benefits it confers, but research keeps confirming one thing: Patients, families and clinicians love it.

These end-of-life conversations are important, says Deborah Carr, a sociologist at Boston University who studies well-being in the last stages of life. A key need of people who know they are dying is tending to relationships with people who matter to them. This includes “being able to communicate their wishes to family and ensuring that their loved ones are able to say goodbye without regret,” she says.

And the closer we get to death, the more we need to understand what our lives have amounted to, says Kenneth J. Doka, senior vice president for grief programs for Hospice Foundation of America. People “want to look back and say, ‘My life counted. My life mattered. My life had value, had some importance,’ in whatever way they define it,” Doka says. “I think dignity therapy speaks to that need to find meaning in life and does it in a very structured and very successful way.”

Chochinov’s search to understand why some people feel despair at the end of life while others do not led him to countries such as Belgium, the Netherlands and Luxembourg, where euthanasia and assisted suicide have long been legal. There he learned that the most common reason people gave for seeking assisted suicide was loss of dignity.

To learn more, Chochinov and his colleagues asked 213 terminal cancer patients to rate their sense of dignity on a seven-point scale. Nearly half reported a loss of dignity to some degree, and 7.5 percent identified loss of dignity as a significant concern. Patients in this latter group were much more likely to report pain, desire for death, anxiety and depression than those who reported little or no loss of dignity.

Dignity at the end of life means different things to different people, but in interviews with 50 terminally ill patients, Chochinov and colleagues found that one of the most common answers related to a dying person’s perception of how they were seen by others.

“Dignity is about being deserving of honor, respect or esteem,” Chochinov says. “Patients who felt a lost sense of dignity oftentimes perceived that others didn’t see them as somebody who had a continued sense of worth.”

Dignity therapy is tailored to enhance this sense of worth. In a session, a therapist — typically a clinician or social worker — carefully leads the patient through nine questions that help a person express how their life has been worthwhile.

“It’s not like a recipe, that you can just read out these nine questions and then call it dignity therapy,” Chochinov says. “We train therapists so that we can help them guide people through a very organic kind of conversation.”

The session typically lasts around an hour. About half is spent gathering biographical highlights, and the other half focuses on what Chochinov calls the “more wisdom-laden” thoughts the patient wants to share. A few days later, the patient receives an edited draft for review. “There’s an ethos of immediacy — your words matter, you matter,” he says. “They can edit it and they can sign off on it to say, ‘That is what I want as part of my legacy.’ ”

Chochinov estimates that nearly 100 peer-reviewed research papers, and at least four in-depth analyses — “systematic reviews” of the accumulated science — have been published so far on dignity therapy, and more studies are ongoing. The largest yet, of 560 patients treated at six sites across the country, is now being conducted by Diana Wilkie, a nursing professor at the University of Florida, and her colleagues.

Wilkie also helped conduct the first systematic review, published in 2015, which came up with a conundrum. When all studies were viewed together, the evidence that dignity therapy reduced the desire for death was lacking.

“The findings have been mixed,” she says. “In the smaller studies, you see benefit sometimes and sometimes not; in the larger studies, not.”

The most definitive study — Chochinov’s original clinical trial, of 326 adults in Canada, the United States and Australia who were expected to live six months or less — found that the therapy did not mitigate “outright distress such as depression, desire for death or suicidality,” although it provided other benefits, including an improved quality of life and a change in how the patients’ family regarded and appreciated them. A few years later, Miguel Julião, a Lisbon physician, and his colleagues conducted a much smaller trial in Portugal in which dignity therapy did reduce demoralization, desire for death, depression and anxiety.

Julião thinks the different outcomes reflect differences in the patient groups: His study focused on people experiencing high levels of distress, while Chochinov’s did not.

Positive and negative results also may depend upon how studies measure “success.” Scott Irwin, a psychiatrist at Cedars-Sinai Cancer in Los Angeles, worked at a San Diego hospice that introduced dignity therapy in 2009.

“It was absolutely worthwhile — no question,” Irwin says. “Not only did the patients love it, but the nurses loved it and got to know their patients better. It was sort of a transformative experience for patients and the care team.”

In Portugal, family members of dying individuals have prompted Julião to develop new uses for the therapy. He and Chochinov first adapted the interview to be appropriate for adolescents. More recently, they created a posthumous therapy for surviving friends and family members. In a study of this survivor interview protocol, “we have wonderful, wonderful comments from people saying, ‘It’s like I’m here with him or with her,’ ” Julião says.

For all its appeal, few patients receive dignity therapy. Though the tool is well-known among clinicians and social workers who specialize in caring for seriously ill patients, it is not routinely available in the United States, Doka says.

A primary barrier is time. The therapy is designed to last just one hour, but in Irwin’s experience at the hospice, patients were often too tired or pain-ridden to get through the entire interview in one session. On average, a therapist met with a patient four times. And the interview then had to be edited by someone trained to create a concise narrative that is true to the patient’s perspective and sensitive in dealing with any comments that might be painful for loved ones to read

Julião says he transcribes each patient’s interview himself and edits it into the legacy document. He says he has enthusiastic responses from clinicians and social workers attending the lectures and workshops he has conducted. “But they don’t do it clinically because it’s hard for clinicians to dedicate so much time to this.”

Dignity therapy is most widely available in Winnipeg, its birthplace, where all clinicians at Cancer Care Manitoba, the organization that provides cancer services in the province, have been trained in the protocol. If a patient expresses interest, or a clinician thinks a patient might be interested, a referral is made to one of the therapists, among them Chochinov.

A few months ago, he spent about an hour with a dying woman. She told him about her proudest accomplishments and shared some guidance for her loved ones.

A few days after he delivered a transcript of the conversation, the woman thanked him by email for their discussion and for the document that “will give my family something to treasure.”

“Dignity therapy is part of the bridge from here to there, from living my life fully to what remains at the end,” she wrote. “Thank you for helping me to tell this story.”

Complete Article ↪HERE↩!

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Shape-Shifting as an End-of-Life Doula During COVID

— We’re not inclined to sit idly as the world suffers

by Francesca Lynn Arnoldy

A doula is a non-medical care provider who supports people through intense times, such as birth and/or death, complementing any available healthcare services. Humans have assisted other humans through these complex thresholds since, well, always. The doula role during birth was formalized (with training programs offering certificates) in the 1990s. A trained doula’s presence during the end-of-life, however, has been a more recent development over the past decade or so. Although doula services vary somewhat depending on gifts, strengths, and interests, doulas focus mainly on the tasks of planning, preparing, and processing. During COVID-19, being an end-of-life doula has taken on an entirely new meaning.

What Type of Care and Support Do Doulas Provide?

Planning

Planning support can include advance care forms, such as directives and supplemental questionnaires. A doula will not make any medical or legal recommendations regarding specific decisions, though. Instead, we encourage clients to have conversations with their doctor or lawyer, and we offer to brainstorm questions together before those appointments. Doulas promote informed consent. We want to ensure clients have all the information they need to make their best choices in order to live well concerning after-death care. Additionally, details like scheduling appointments and visits as well as organizing meal deliveries and pet walking can be arduous alongside the emotional, exhausting journey at life’s end. Doulas can manage some of the minutiae so loved ones can be more present at the bedside. To aid in the process of releasing one’s earthly grasp, a doula might assist with “death cleaning” and/or bequeathing treasured items.

Preparing

Preparing includes setting up each client’s space and natural network of friends and family members for optimal living and dying (vigil) experiences — with contingency plans, of course. Doulas connect clients to beneficial resources when services fall outside of our role and scope. We research what is available in our local community and have a trusty directory list at the ready. We gently remind clients, “It’s always too early until it’s too late,” in terms of accepting hospice care, checking off bucket list items, or expressing what they hold deeply.

Processing

Doulas are story catchers. We listen with sincerity and kindness. Many clients spend time reminiscing as time grows short. They appreciate invitations to vent and lament to someone who will not attempt to cheer them up or minimize their concerns. They want to reflect on memories, hardships, joys, and patterns of behavior. They might want to capture some of their stories in a more lasting form — legacy projects. Doulas help design customized options that can include audio or video recordings, a memory book with photos, a t-shirt quilt, artwork, or another type of gift that reflects the uniqueness of each particular person.

Pandemic Pressure

COVID-19 has thrust our undeniable mortality into our collective awareness. Like many people, doulas needed to adapt creatively to meet the growing need. In the month leading up to COVID-19 reaching our shores, I was visiting with a family facing loss. I provided respite to the partner while assisting my client with creating keepsakes for their children. We were already facing challenges related to this client’s disease progression, so when safety protocols kept me away, everything changed. I continued my phone calls with the partner, but it was far from ideal. Honestly, I felt helpless and wished I could have done more. Around this same time, many hospices put volunteers on hold to minimize risk, further isolating people.

While we are skilled at “sitting on our hands” when the moment calls for it, such as while sitting vigil peacefully during active dying, doulas are not inclined to sit idly as the world suffers. During lockdowns, some of our work shifted to virtual platforms when circumstances allowed, depending on the cognition and energy level of our clients, their interest in that kind of connection, and Internet bandwidth. Video visits have been a lifeline for many. This led me to wonder, how else could I provide support during this time rife with loneliness?

Along with several colleagues, I helped launch an IRB-approved research project focused on pandemic grief. Our StoryListening Study is inspired by research on storytelling during early bereavement with healthcare surrogates. We are inviting people who endured a loss during the pandemic (caused by COVID-19 or inevitably affected by it), including clinicians, affected staff, friends, or family members to virtually share their grief story with a trained StoryListening Doula. As a StoryListening Doula, I do not direct or reframe the participant’s experience. I invite. I allow. I am an ally, meaning I walk alongside, utilizing silence often and mirroring back what I am hearing to deepen or clarify the exploration judiciously.

I feel honored to bear witness to struggle, stress, and resilience as people integrate a cataclysmic change and/or compounding grief. I am present as people sift through remnants of a broken heart or an overwhelmed psyche to perhaps find glimpses of hope, pride, and even meaning. While these stories are often heavy and emotional, they are equally inspiring and awe inducing. Sharing these tender stories might help illuminate a person’s inner truth and/or sources of strength.

I have been able to rejoin a few clients in person more recently, which is a welcome advancement, yet my face is doubly covered and this undoubtedly affects our ability to communicate. As we dream of the days beyond the pandemic, I anticipate some of these newer practices will persist. We will likely have hybrid options available — virtual for those who prefer it or who cannot easily access in-person care and face-to-face for others. Regardless, doulas will carry on with our work of assisting others as they face the hardest things, morphing as needed with steadfast dedication.

Complete Article ↪HERE↩!

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As good as dead?

The ethical complexities of declaring someone dead

By Clarice Jacobson

It is often said that nothing is certain in life except death and taxes. And while it is certain we will all die, the definition of death is much murkier.

Dr. Trevor Bibler, assistant professor at Baylor College of Medicine and clinical ethics consultant at Houston Methodist Hospital, Claire Horner, J.D., M.A., assistant professor at Baylor College of Medicine and clinical ethics consultant at Baylor St. Luke’s Medical Center, and Dr. Mark Hobeika, assistant professor of surgery, Weill Cornell Medical College and transplant surgeon at Houston Methodist Hospital, are well versed in this topic. They have sat at the bedside with patients and families dealing with ethical issues surrounding end-of-life care.

They each have reviewed the literature and written on the topic (a sample of their work can be found below).

In the following Q&A they discuss common misconceptions and controversies related to death.

When is a patient in the United States declared dead?

Dr. Bibler: In the early 1980s, the Uniform Determination of Death Act defined death as either “(1) [the] irreversible cessation of circulatory and respiratory functions or (2) [the] irreversible cessation of all functions of the entire brain, including the brain stem.” This act was adopted by all 50 states in the United States in the following years, with some modifications.

Can someone be falsely declared dead? Has this happened?

Prof. Horner: There have always been rare stories throughout history of patients waking up in the morgue or at the funeral, having been alive but with vital signs that were not detected by physicians. However, with modern medicine and our ability to monitor heart rate, brain activity, respiration and other biological markers, declarations of death aren’t made without a good deal of certainty.

In a declaration of brain death, for example, a series of tests are performed at the time of suspected brain death, and in some cases are performed again a few hours later, to ensure that the patient’s body has been comprehensively evaluated for any signs of life. However, there is some variability around the world on which tests are used and what criteria are met.

Recent stories in the media about individuals who have been declared brain dead being maintained on machines for months afterward have not usually been about a person coming back “alive” but about a disagreement about whether all of the criteria were met for the brain death diagnosis in the first place, and whether cessation of brain function should properly be called death in the first place.

Brain death differs from traditional circulatory death; why does this matter?

Prof. Horner: With traditional circulatory death, it is obvious to observers that the person has died. The chest stops moving, rigor mortis sets in, and the patient’s body begins to decay because blood is no longer circulating.

In brain death, however, bodies are still maintained on machines that breathe for them and maintain circulation. This person’s chest is still moving, their body looks the same, and it can be hard for us to look at them and think of them as dead. The death of the brain means the end of the body as an integrated whole – without the ventilator, the lungs would not move and the lack of oxygen would stop the other organs from functioning. If bodies looked the same after brain death as they do after circulatory death, there would be much less controversy about it.

As technology continues to advance, do you think this will or should alter the definition of death?

Dr. Bibler: Yes. I see no reason to think our conceptions of death won’t evolve with changes in technology. Arguably, the entire reason professional medicine decided to distinguish the cardio-pulmonary from neurological conceptions of death is because of technological advances.

First, according to the popular story, there was a problem: medicine had advanced to the point where people with devastating neurological injuries could remain alive for days, months, or even years, with permanent respiratory support and medically administered nutrition and hydration. Their hearts were beating, but professionals were skeptical that continued physiological existence was appropriate for medicine. The 1968 the Harvard ad hoc committee on brain death explicitly said, that their “primary purpose is to define irreversible coma as a new criterion for death.” They did not say they were appealing to an old idea, but rather, a new one because of technological advances.

Second, the technologies involved in organ transplantation also played a role in these early definitions. Returning to the Harvard committee, they state they are motivated by the need to update “obsolete criteria for the definition of death” because the old cardiopulmonary criteria “can lead to controversy in obtaining organs for transplantation.” In other words, without a new conception of death, transplant surgeons may be accused of procuring organs from living patients rather than decedents.

Without either the technological advances in life-sustaining technologies, there may have never arisen a desire to create a new way of separating the living from the dead.

What are the main bioethical controversies surrounding the topic of legal death?

Dr. Bibler: One area is the definition of death. Some are confident that with agreed upon definitions of death there will be additional clarity on the ethical and professional aspects of medicine.

Another in clinical medicine is the scope of patient or family preferences when testing for and determining death. As mentioned above, declaring death by neurological criteria requires examination. Should family have the authority to say, “No. You can’t examine the patient to test whether or not they meet the criteria”? Should families (and often their religious communities) have the authority to refuse to accept the findings of the exam? If they refuse, then what? So, I believe medicine’s response to families who object to either the exam or the determination will be another area of continued controversy, even if the law provides a definition that many agree upon.

Complete Article ↪HERE↩!

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Advance Directives

— Give the gift of peace of mind

By Lisa Larson

Looking for the perfect gift this time of year? You may be surprised to find the most generous gift you can give has nothing to do with wrapping paper and bows.

While it might not be the conversation you were planning to have this holiday season, sharing your end-of-life wishes with family members is a gift that will bring peace of mind and comfort when you — and they — need it most.

“It’s a gift to yourself, as well as your loved ones,” said Mary Helen Stricklin, nursing director for Palliative Care at Intermountain Healthcare. “It gives you a chance to think about what matters most to you, and it allows you to share your advance directives with family members so they know exactly what you want.”

“We’ve seen families torn apart in a crisis because they didn’t know what their loved one wanted, now that they are making decisions and family couldn’t agree on how to handle the situation,” Stricklin continued. “We’ve also seen families who were able to feel peace in the middle of an otherwise distressing situation because they had a plan in place.”

For anyone looking to create an advance directive, there are several resources available at no cost. Call 435-251-1850 to ask questions and get the ball rolling. Or log onto https://intermountainhealthcare.org/health-information/advance-directive/ for more information.

Having your wishes documented in an advance directive can alleviate familial stress because the person chosen to make medical decisions is prepared. “It reduces confusion and decreases the anxiety and fear people might have,” Stricklin said.  Knowing your wishes and sharing them can bring great peace.

While some people may feel overwhelmed at the idea of starting the process, Stricklin said there are just a few steps, all of which can be done without any cost to the individual.

“You do not need an attorney to do this,” Stricklin said. “And in Utah, you don’t even need a notary. Just a witness to your signature.”

The best way to begin the process is to have a conversation with yourself, really evaluating what matters most, Stricklin said. Take time to reflect on what is most important to you from a health, spiritual, religious, and cultural perspective.  After that, you need to choose an agent who will be responsible for following through on your advance directives if you can’t make decisions yourself. Once you’ve made those decisions, the next vital steps are to create a document outlining your wishes and then share that document with your loved ones, as well as your doctor and the hospital that is likely to treat you.

While some may feel advance care planning is only for the aging population, Stricklin said anyone over the age of 18 should have something in place.

“Think of it as an important part of your emergency preparedness,” she said. “People always think it’s too soon until it’s too late.”

One way to get yourself thinking on the topic is to consider a sudden and unexpected life-threatening situation, such as a car accident, that could leave you unable to communicate your wishes.

“We have young people in the hospital all the time as the result of an ATV accident, falling off a cliff while hiking, car accidents and more,” Stricklin said. “You may never have to use your advance directive plan, but it is comforting to know it’s there just in case.”

Stricklin added that it is important to remember this is a fluid document. You can change your mind as your preferences change by drafting a new document at any time. Nothing is set in stone.

In fact, Stricklin said she suggests people review their advance directives regularly to ensure it is up to date with the proper contact information and that it still reflects your most current wishes.

People can use the “five Ds” as suggestions for when to review their documents: Divorce, Death in the family, Diagnosis change, Deterioration in your health, or at least every Decade.

Complete Article ↪HERE↩!

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For Older Adults, Smelling the Roses May Be More Difficult

By Judith Graham

The reports from covid-19 patients are disconcerting. Only a few hours before, they were enjoying a cup of pungent coffee or the fragrance of flowers in a garden. Then, as if a switch had been flipped, those smells disappeared.

Young and old alike are affected — more than 80% to 90% of those diagnosed with the virus, according to some estimates. While most people recover in a few months, 16% take half a year or longer to do so, research has found. According to new estimates, up to 1.6 million Americans have chronic smell problems due to covid.

Seniors are especially vulnerable, experts suggest. “We know that many older adults have a compromised sense of smell to begin with. Add to that the insult of covid, and it made these problems worse,” said Dr. Jayant Pinto, a professor of surgery and specialist in sinus and nasal diseases at the University of Chicago Medical Center.

Recent data highlights the interaction between covid, advanced age and loss of smell. When Italian researchers evaluated 101 patients who’d been hospitalized for mild to moderate covid, 50 showed objective signs of smell impairment six months later. Those 65 or older were nearly twice as likely to be impaired; those 75 or older were more than 2½ times as likely.

Most people aren’t aware of the extent to which smell can be diminished in later life. More than half of 65- to 80-year-olds have some degree of smell loss, or olfactory dysfunction, as it’s known in the scientific literature. That rises to as high as 80% for those even older. People affected often report concerns about safety, less enjoyment eating and an impaired quality of life.

But because the ability to detect, identify and discriminate among odors declines gradually, most older adults — up to 75% of those with some degree of smell loss — don’t realize they’re affected.

A host of factors are believed to contribute to age-related smell loss, including a reduction in the number of olfactory sensory neurons in the nose, which are essential for detecting odors; changes in stem cells that replenish these neurons every few months; atrophy of the processing center for smell in the brain, called the olfactory bulb; and the shrinkage of brain centers closely connected with the olfactory bulb, such as the hippocampus, a region central to learning and memory.

Also, environmental toxic substances such as air pollution play a part, research shows. “Olfactory neurons in your nose are basically little pieces of your brain hanging out in the outside world,” and exposure to them over time damages those neurons and the tissues that support them, explained Pamela Dalton, a principal investigator at the Monell Chemical Senses Center, a smell and taste research institute in Philadelphia.

Still, the complex workings of the olfactory system have not been mapped in detail yet, and much remains unknown, said Dr. Sandeep Robert Datta, a professor of neurobiology at Harvard Medical School.

“We tend to think of our sense of smell as primarily aesthetic,” he said. “What’s very clear is that it’s far more important. The olfactory system plays a key role in maintaining our emotional well-being and connecting us with the world.”

Datta experienced this after having a bone marrow transplant followed by chemotherapy years ago. Unable to smell or taste food, he said, he felt “very disoriented” in his environment.

Common consequences of smell loss include a loss of appetite (without smell, taste is deeply compromised), difficulty monitoring personal hygiene, depression and an inability to detect noxious fumes. In older adults, this can lead to weight loss, malnutrition, frailty, inadequate personal care, and accidents caused by gas leaks or fires.

Jerome Pisano, 75, of Bloomington, Illinois, has been living with smell loss for five years. Repeated tests and consultations with physicians haven’t pinpointed a reason for this ailment, and sometimes he feels “hopeless,” Pisano admitted.

Before he became smell-impaired, Pisano was certified as a wine specialist. He has an 800-bottle wine cellar. “I can’t appreciate that as much as I’d like. I miss the smell of cut grass. Flowers. My wife’s cooking,” he said. “It certainly does decrease my quality of life.”

Smell loss is also associated in various research studies with a higher risk of death for older adults. One study, authored by Pinto and colleagues, found that older adults with olfactory dysfunction were nearly three times as likely to die over a period of five years as seniors whose sense of smell remained intact.

“Our sense of smell signals how our nervous system is doing and how well our brain is doing overall,” Pinto said. According to a review published earlier this year, 90% of people with early-stage Parkinson’s disease and more than 80% of people with Alzheimer’s disease have olfactory dysfunction — a symptom that can precede other symptoms by many years.

There is no treatment for smell loss associated with neurological illness or head trauma, but if someone has persistent sinus problems or allergies that cause congestion, an over-the-counter antihistamine or nasal steroid spray can help. Usually, smell returns in a few weeks.

For smell loss following a viral infection, the picture is less clear. It’s not known, yet, which viruses are associated with olfactory dysfunction, why they damage smell and what trajectory recovery takes. Covid may help shine a light on this since it has inspired a wave of research on olfaction loss around the world.

“What characteristics make people more vulnerable to a persistent loss of smell after a virus? We don’t know that, but I think we will because that research is underway and we’ve never had a cohort [of people with smell loss] this large to study,” said Dalton, of the Monell center.

Some experts recommend smell training, noting evidence of efficacy and no indication of harm. This involves sniffing four distinct scents (often eucalyptus, lemon, rose and cloves) twice a day for 30 seconds each, usually for four weeks. Sometimes the practice is combined with pictures of the items being smelled, a form of visual reinforcement.

The theory is that “practice, practice, practice” will stimulate the olfactory system, said Charles Greer, a professor of neurosurgery and neuroscience at Yale School of Medicine. Although scientific support isn’t well established, he said, he often recommends that people who think their smell is declining “get a shelf full of spices and smell them on a regular basis.”

Richard Doty, director of the University of Pennsylvania’s Smell and Taste Center, remains skeptical. He’s writing a review of smell training and notes that 20% to 30% of people with viral infections and smell loss recover in a relatively short time, whether or not they pursue this therapy.

“The main thing we recommend is avoid polluted environments and get your full complement of vitamins,” since several vitamins play an important role in maintaining the olfactory system, he said.

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