The Denver ‘death companion’ making space for queer grief

Desiree Celeste works in Denver as a death companion focused on helping the LGBTQ+ community process death and grief.

by Corbett Stevenson

When Desiree Celeste begins to feel emotional while discussing the death of their grandmother, they refuse to apologize — instead, they make space to explore and feel the depths of their grief. 

“I’m not sorry, actually. I will be mourning her for the rest of my life,” said Celeste, who uses they/them pronouns.

Celeste said that their grandma “always was and always will be” their best friend. When she died after a three year stay in hospice, the emotional care Celeste and their family received was lacking.

“Her death almost killed me, that’s how deep my grief was,” they said. “Don’t get me wrong, the hospice workers were amazing, they did a great job. But I was still left feeling like I needed more. I needed someone outside of that group that could hold space for me and my grief.”

Now, years later, Celeste has built themself into the companion they sorely needed in those dark moments. 

Celeste works as a death companion. Also known as a death doula or a death midwife, death companions dedicate themselves to supporting people as they experience grief and death. They can help make funeral arrangements, answer questions about death and dying, organize euthanasia for pets, help process grief years after an event and much more. 

Celeste’s trusty notebook, covered in stickers discussing death and dying. 

Although Celeste officially started their work in 2021, they said they’ve been doing some forms of death companionship for most of their life.

“At pet stores I used to take home animals that smelled like death … that I knew would die. I took them home so I could care for them and make sure they didn’t die alone,” they said.

But everything truly came to a head when Celeste lost their grandmother. On top of the grief of losing their best friend, they never had a chance to come out to her as nonbinary, which added a unique and terrible pain to Celeste’s experience. 

“I never came out to my grandma, she never knew who I really was,” they said.

Influenced by that pain, Celeste is a death companion focused on providing services to other LGBTQ+ individuals, for whom death and grief can be exceptionally difficult.

“I worked with a client once to help them organize an at-home euthanasia for their pet. They identified as transgender, and were terrified of reaching out to veterinarians because of their fear of being mis-gendered,” Celeste said. “Talking to the vet, picking up the ashes and even getting the body cremated are all opportunities where they could have been mis-gendered, so I acted as a barrier and shielded them from that pain.”

In another instance, Celeste worked with another transgender client who was the primary caregiver for an individual who had died. Living in a conservative and rural area, it was unsafe for the client to come out, and so they would be facing funeral directors, doctors and other professionals as someone they weren’t.

“When someone is experiencing grief, they’re already so fragile. It’s not fair to have to hide who you are while going through that, so I was there to offer emotional support and be someone who knew what was really going on,” they said. “It’s really important to have someone to explore those feelings with without hiding anything.”

A promotional flyer created for Celeste’s Queer Grief Gatherings. 

One of the most important aspects of their work is the unique variety of care Celeste offers as a death companion. 

“The important thing to remember is that it’s not either/or — you can work with hospice and social workers and still need the support of a death companion,” they said. “When people are experiencing the anxiety that comes with death, they need to feel safe. I’m here to offer a vast and flexible variety of services to help with that.”

Starting in February, Celeste began to offer virtual processing spaces for those who identify as queer. The goal of those spaces, they said, is to offer space and time to talk about death and grief in all its forms. 

“When I started my work, I wasn’t focusing on queer clients, but over time I think my clients began to see a piece of themselves in me, and they just started to gravitate towards me.” they said. “A death companion’s care is truly unique, I strive to meet people wherever they’re at.”

Complete Article HERE!

Ambiguous Grief

— Mourning Without Closure

Learning about ambiguous grief may help in trying to make sense of loss that lacks conclusion or feels unresolved.

by Gina Ryder

  • Ambiguous grief is unresolved grief where circumstances lack a clear conclusion or closure.
  • It can effectively be treated with the support of a mental health professional through eye movement desensitization and reprocessing (EMDR), cognitive behavioral therapy (CBT), or acceptance and commitment therapy (ACT).

Grief can take shape in so many ways, and it can also be shapeless. If you’re facing or have ever faced a loss that isn’t clearly defined, you may be experiencing what’s known as ambiguous loss.

Our cultural script says grief follows a linear path, from loss to acceptance, but anyone who has faced loss will likely tell you that isn’t always true.

“The most important thing to remember when dealing with ambiguous loss is: It’s not your fault. Sometimes people need to hear this multiple times. It’s so common to blame ourselves in the wake of trauma,” says Jessie Stern, PhD, a postdoctoral research associate at the University of Virginia.

“Ultimately there’s much in life that’s neither just nor predictable, and much that’s beyond our understanding and control,” Stern continued.

Ambiguous grief is unresolved grief that might have resulted from complex trauma where circumstances lack a clear conclusion or closure.

Coined in the ‘70s by famous psychotherapist Pauline Boss, PhD, when she was a doctoral student, the term ambiguous grief has provided language for and acknowledgment of ambivalent loss.

“Labeling it as ambiguous loss can be very healing when we have terms to describe what we’re going through. It helps us cope better,” says Beth Tyson, a psychotherapist based in Pennsylvania.

Boss developed her theory of ambiguous grief across decades in her work as a family therapist in Minnesota. In 1999, she published the seminal book “Ambiguous Loss: Learning to Live With Unresolved Grief,” which outlined the two types of ambiguous loss: type one and type two.

Type One

Type one ambiguous grief happens when someone is physically gone but psychologically there. This might refer to people who are missing or people whose bodies are gone in some way.

Examples of physical ambiguous loss may include tragedies, such as:

  • kidnapping
  • war
  • genocide
  • terrorism
  • natural disasters such as floods, hurricanes, and earthquakes
  • ethnic cleansing

Type Two

Type two ambiguous loss happens when there’s a lack of psychological presence while someone is physically there. This might refer to people who are emotionally unavailable or cognitively gone.

Examples of type two ambiguous loss may be identified as:

  • losing a baby to miscarriage
  • having a parent with substance use disorder
  • losing contact with a loved one via immigration
  • being a child of the foster care system
  • loss of dreams and plans due to setbacks or uncertainty
  • having a loved one facing a disease like Alzheimer’s or other illnesses that impact memory
  • experiencing a loss without closure such as suicide and infant death

If you experience ambiguity that persists in the grieving process you may notice:

  • blocked cognition
  • difficulties with coping
  • the grief process might feel “frozen”
  • persistent sadness for uncertain reasons

Ambiguous grief can effectively be treated by Eye Movement Desensitization and Reprocessing (EMDR) to reprocess the trauma of the loss and then install a positive belief as opposed to a lingering unhelpful belief.

Trauma-informed cognitive behavioral therapy (CBT) may also be helpful, as well as acceptance and commitment therapy (ACT), to practice acceptance of the confusing feelings and gain some distance from ruminative thoughts.

Anticipatory grief is when you experience grief before a loss occurs. Anticipatory grief might be felt by people waiting for a possible terminal illness diagnosis or by loved ones of someone nearing death.

In some cases, ambiguous grief can overlap with anticipatory grief. Anticipatory grief can even turn into ambiguous grief.

Researchers studied the emotions of loved ones of missing people in Italy. They noted the presence of both ambiguous grief and anticipatory grief.

The studyTrusted Source, published in 2020, found a prolonged state of uncertainty contributes to both anticipatory and ambiguous grief. In other words, experiencing an endless wait for news in tragic circumstances can contribute to both forms of grief.

When the study participants finally heard the news of missing loved ones, they reported their sense of imminent loss decreasing while prolonged grief settled in.

Boss’ theory of ambiguous grief includes a framework for how to best cope with grief that may lack a clear path.

Seek meaning through creativity

“One of the most powerful ways that humans make meaning out of ambiguous loss is through art: we sing, dance, write poems, produce theater, make art, grow tulips in the garden,” says Stern.

“We listen to the music of our ancestors and our role models, which expresses something deeper about our own grief while showing us how others made their way through it.”

Explore a new identity for grief

Psychologist Susan David, PhD, once said, “Grief is love, looking for a home.” Remembering that your grief can take on a new meaning with time is key.

Tyson says, “Finding something to love can be a coping skill, such as a small pet or other beloved objects to stand in for the person who’s missing. Mentors and family members can also take on this role.”

Try to become OK with ambivalence

Ambivalence is a deeply human part of life. It’s natural to feel ambivalent in the wake of grief. What matters is how we handle our complicated emotions.

“In the aftermath of ambiguous loss, there can be a strong tendency to numb — with overwork, social media, Netflix, food, or alcohol. It’s human to want to turn away from painful emotions,” says Stern.

“But the problem with numbing is that it turns us away from the important work of grieving. Numbing shuts down a deep part of ourselves,” she adds.

Consider changing your relationship to loss

“It can be helpful to redefine the roles within a family after a loved one has gone missing or separated from their family of origin,” says Tyson.

“So, for example, if you have a child who is being raised by their grandparents, they’re no longer in the grandparent role, but the parent role.”

Pursue hope

There are lots of ways to experience hope. One way to find hope is to acknowledge your and others’ grief by setting aside time to intentionally ponder memories or allow certain emotions to arise.

Tyson suggests setting aside 10 minutes to deliberately think about the person who’s missing from your life. This may help relieve your mind of constantly searching for solutions.

If your brain knows you’ll have a specific time to think about the problem, it may allow more time for you to focus on other tasks.

Ambiguous grief is a theory of grief that may help us make sense of grief or trauma that can feel senseless or shapeless.

Even if things never seem to make sense, having hope that we can learn to be OK with our ambivalence can help with coping.

“Everyone walks their own path, cycling through many stages over years or a lifetime. There’s no one path through grief; every loss is unique, and our responses to it vary depending on our culture, upbringing, personality, and stage of life,” says Stern.

Complete Article HERE!

Dogs experience a form of mourning when another dog in the household dies

Research finds behaviour changes in dogs who have lost a canine companion

The research found that 86% of owners said their surviving dogs had shown behavioural changes after the death of another canine in the household.


The loss of a loved one can have a profound impact on humans, affecting everything from sleep patterns to appetite. Now researchers say they have found similar behaviour changes in dogs who have lost a canine companion.

While the team say it is not clear if the findings can be described as grief, they say the work potentially indicates an overlooked welfare issue.

Dr Federica Pirrone of the University of Milan, who is one of the study’s authors, said: “Dogs are highly emotional animals who develop very close bonds with the members of the familiar group. This means that they may be highly distressed if one of them dies and efforts should be made to help them cope with this distress.”

Expressions of grief are not unique to humans: great apes, dolphins, elephants and birds are among species that have been observed to take part in rituals around death and appear to mourn.

Writing in the journal Scientific Reports, Pirrone and colleagues describe how they analysed the responses of 426 Italian adults who completed a “mourning dog questionnaire” online to investigate how canines experience grief.

All of the participants had experienced the loss of one of their dogs while at least one other dog was still alive, and the questionnaire looked at the behaviour and emotions of the owner and their surviving dogs after the death.

The results reveal that 86% of owners said their surviving dogs had shown behavioural changes after the death of another canine in the household.

Pirrone said: “Overall, dogs were reported to play and eat less, sleep more and seek more for owners’ attention.” She said the results did not appear to be affected by the level of attachment between the owner and their dog or whether they humanised their pets, suggesting the owners were not simply projecting their grief.

The team said the changes did not turn out to be linked to how long the dogs had lived together or whether the surviving dogs had seen the corpse.

The researchers said there were a number of possible explanations for the findings, including that the death may have disrupted shared behaviours for the surviving dogs.

“In support of this hypothesis we found that if dogs used to share food during life, the surviving dog was more likely to reduce her/his level of activities and sleep more after the loss,” the authors wrote.

The results also revealed behavioural changes were stronger for dogs that were reported to have had a friendly relationship with the animal that had died, or who had been their parent or offspring.

“Most likely this means that the surviving dog has lost an attachment figure, who provided safety and security,” said Pirrone.

Human emotions may also play a role: increases in the surviving dogs’ levels of fear and a reduction in food consumption were associated with greater suffering, anger and psychological trauma in the owners in response to the death.

“This means that there might have been some form of emotional contagion or of social transmission of fear, that is common in social species as part of an adaptive coping strategy with potentially dangerous circumstances,” said Pirrone. The team said, however, the finding could also be linked to owners’ perceptions of the surviving dogs’ behaviour or emotions.

Pirrone said the definition of “grief” in dogs, as for young children, was not straightforward.

“Dogs do form emotional bonds, and hence the loss of a companion animal in their household can be expected to cause behavioural changes, like those we recorded in our study, which overlap what we normally interpret as being grief and mourning,” she said. “Of course, based on our results we still cannot tell whether these dogs were responding only to the ‘loss’of an affiliate, or to their ‘death’ per se.”

Prof Samantha Hurn, a social anthropologist at the University of Exeter, said it was important to understand what a dog may experience upon the death of a canine companion, but added the study had limitations, including that owners were not always good at reading dog behaviour, while the use of questionnaires involving scales for such a subjective issue may limit the conclusions that can be drawn.

She said: “In the course of my own research I have experienced many dogs and other animals behaving in very different ways, but ways which nonetheless suggested to me that they were emotionally impacted by the death of a close companion.”

Complete Article HERE!

Preparing your loved ones for when you are no longer there

It is essential to ensure that all your affairs are in order to avoid your family having to scurry around when you die.

By Tian Ebersohn

Since the outbreak of the Covid-19 pandemic, the virus has spread worldwide like wildfire, and millions of people have been affected by the unexpected death of a loved one. Nobody wants to think about death, but ask yourself this question right now – what if I were to die today? Would your loved ones be plunged into chaos and uncertainty and have to deal with this on top of the trauma of your passing?

In order to protect your loved ones from this harsh reality, you might want to apply the following practical guidelines while you’re still alive.

It is essential to ensure that all your affairs are in order, to avoid your spouse and family or your next of kin having to scurry around in the event of your death.

  • Put together a “life file” that contains all your important documents and information, along with a full list of, for example, your assets and liabilities, credit insurance, policies, usernames and passwords, as well as your executor and financial advisor’s contact details.
  • Ensure that you have a valid will in place.
  • Should you not wish to be kept alive artificially you might consider having a living will drawn up. A living will is an instruction to medical practitioners and your next of kin regarding your wishes if the difficult decision to turn off the machines that are keeping you alive must be taken. If you are a registered organ donor, you can also put this fact on record in your living will.
  • Your loved ones need to be aware of your wishes regarding cremation or burial, the details of any funeral cover you may have, and whom to contact when the inevitable happens.

The suggestions that follow might sound trivial, but make sure your spouse and family know how everything works in and around the house.

  • Be certain that your spouse has access to sufficient funds to cover all expenses for at least six to eight months. Most of us are aware of the challenges facing the Master’s offices nationwide, and estates are taking longer to be wound up.
  • Your spouse needs to start building up their own credit record in your lifetime to be able to qualify for services and utilities, a cell phone contract, a mortgage or a hire purchase agreement after your death, if not already.
  • Check that beneficiaries have been nominated for all your life policies, where necessary, and that nomination forms have been completed in respect of any annuities and group insurance you may have.
  • It is a good idea for your spouse to meet with your financial advisor and start building a relationship of trust between them so that the advisor can provide professional advice on your spouse’s future once you are longer there.
  • Have business continuity discussions with partners / next of kin to manage continuity and risks.
  • Ensure liquidity in the estate to pay administration costs, liabilities and taxes that will become due.

Using the above basic guidelines will have a positive effect and make the transition easier for all concerned.

Some guidelines for the surviving spouse to manage financial expectations:

  • Adequate funds are unlikely to be a major problem for your surviving spouse if you have managed your affairs well during your lifetime. This includes having made provision for life insurance so that there will be sufficient income to cover the expenses, as well as having set up a network of competent and reliable people to provide your spouse with professional advice.
  • If the surviving spouse is in the unfortunate position of having insufficient funds, careful planning must be done to provide for the basic expenses such as rent or a mortgage, as well as utility bills, food and insurance premiums.

It is important for your spouse to receive advice from a financial advisor – one with whom a good relationship has already been established – on investments, cash flow and how a basic budget (income and expenses) work. The financial advisor will assist here with a new plan to secure your spouse’s future.

  • Don’t be in a rush to make major financial decisions straight away. Something that sounds like a good idea right now will not necessarily seem so wise in six months or a year.
  • People are living longer and provisions must be made for the available funds to generate an adequate income. Ensure that the quantum of life insurance is determined in line with a properly prepared cash flow projection.
  • A surviving spouse should update their will in order to make provision for guardians, trusts and the like.

People often make poor financial decisions during the mourning process and therefore it is important to obtain reliable professional advice ahead of time in order to help you make well-informed choices, both for your benefit and for your family’s future.

Complete Article HERE!

First ever recording of moment someone dies reveals what our last thoughts may be

Does your life really flash before your eyes when you die?


What happens when we die?

Scientists may finally be in a position to answer that question after they recorded the brain waves of a patient as her life ended.

Crucially, they didn’t set out to capture this data – instead it ocurred by happenstance.

Researchers in the United States were running an electroencephalogram (EEG) on an 87-year-old man who suffered from epilepsy.

An EEG measures the electrical activity of your brain and, in this case, was being used to detect the onset of seizures.

However, during the treatment, the patient had a heart attack and died.

As such, the scientists were able to record 15 minutes of brain activity around his death. And what they found was extremely interesting.

Focusing on the 30 seconds either side of the moment the patient’s heart stopped beating, they detected an increase in brain waves known as gamma oscillations.

These waves are also involved in activities such as meditation, memory retrieval and dreaming.

We can’t say for sure whether dying people really do see their life flash before their eyes, but this particualar study seems to support the idea.

And the scientists say the brain is capable of co-ordinated activity for a short period even after the blood stops flowing through it.

‘Through generating oscillations involved in memory retrieval, the brain may be playing a last recall of important life events just before we die, similar to the ones reported in near-death experiences,’ said Dr. Ajmal Zemmar, lead author of the study, which was published in the journal Frontiers in Ageing Neuroscience.

‘These findings challenge our understanding of when exactly life ends and generate important subsequent questions, such as those related to the timing of organ donation.’

In the study, the researchers point out that similar changes in brainwaves have been detected in rats at the time of death.

However, this is the first time it’s been seen in a human.

Dr. Zemmar and his team say that further research needs to be done before drawing any definite conclusions.

This study arises from data relating to just a single case study. And the patient’s brain had already been injured and was showing unusual activity related to epilepsy.

It’s not clear if the same results would occur in a different person’s brain at the time of death.

‘Something we may learn from this research is: although our loved ones have their eyes closed and are ready to leave us to rest, their brains may be replaying some of the nicest moments they experienced in their lives,’ Dr. Zemmar said.

Complete Article HERE!

Understanding Respite Care

by S. Behring

Full-time caregiving is an around-the-clock job. Caregivers are often managing caring for a loved one with work, other family responsibilities, their own health, home upkeep, and more.

Respite care is care designed to give live-in caregivers a short-term break. Whether this break involves hours or weeks, respite care can help caregivers attend appointments, run errands, work outside their home, or simply take some time to relax and recharge.

Respite care helps provide a break for live-in caregivers including family members or professionals. Caregivers may need respite care for just long enough to run important errands, or they might need help to care for their loved ones while they’re out of town for several days or weeks.

Respite care arrangements are made in advance by the family caregiver and the respite care professional. Respite care may take many forms. It may be provided by:

  • family and friends
  • home care agencies
  • some nursing and assisted living facilities
  • adult day centers
  • individual care professionals

Respite care services

The exact services you’ll receive with respite care depend on your individual needs and situation. As a rule, respite care professionals are responsible for keeping the person in their care safe and healthy. Depending on the client, this might include:

  • Assistance with household tasks. Respite care professionals who visit clients at home can help complete everyday chores, such as laundry and meal preparation.
  • Assistance with dressing and bathing. Respite care professionals can assist clients with bathing, dressing, using the bathroom, other essential daily tasks.
  • Transportation to medical appointments. Respite care services can ensure clients get to all medical appointments safely and on time.
  • General medical care. Respite care professionals won’t be able to give a hospital-level of care, but they’ll be able to help with medications, check on wounds, and perform other basic medical care. Some respite care professionals can handle more medically complex clients.
  • Companionship. Respite care professionals can keep clients company and make sure they’re well cared for.

There are several types of respite care to fit different situations and fill different needs. The most common types of respite care are discussed below.

Informal respite care

Informal respite care is care offered by friends or family members. This is often a great solution for occasional errands or appointments, especially if you have trusted loved ones who live close by.

Adult day services

Adult day services are great options for seniors who enjoy spending time out of their homes. Adult day services are provided at locations like senior centers and churches. These services offer the chance for seniors to have socialization along with supervision and medical care. They can allow you to work or complete needed tasks during the day.

In-home care

In-home care comes to you. You can find in-home respite care for temporary situations or work out a regular schedule with a home care aid. You can find respite in-home care through home health agencies or by looking for individual caregivers.

Residential care

Residential care is respite care in a senior community, such as a nursing or assisted living facility. This type of care allows for overnight stays and can last for several weeks. You can use this type of respite care if you’ll be out-of-town or need a longer break.

One of the primary reasons for respite care is to help reduce caregiver burnout. Caring for a loved one full-time is a big responsibility. Many family caregivers are happy to take care of someone who is such an important part of their lives, but that doesn’t mean it can’t be stressful.

In fact, caregiver burnout is incredibly common. Family caregivers often find themselves overwhelmed, frustrated, and anxious. Over time, this can damage the caregiver’s own health.

Respite care is a great way to step back and take a breath. It can help you relax and lessen some of the symptoms of caregiver burnout. When you know your loved one is being cared for in a safe environment, even for a few hours, it’s one less thing for you to juggle. That can make a significant difference in your overall mental and physical well-being.

In addition to reducing general burnout, there are several situations respite care can help with. These include when the primary family caregiver:

  • works outside the home
  • has out-of-town obligations
  • has a scheduled vacation
  • has an upcoming major medical procedure
  • has been showing signs of severe burnout

The cost of respite care depends on many factors, such as:

  • the type of respite care you choose
  • your insurance
  • your location

For instance, in-home care and assisted living both cost an averageTrusted Source of around $150 per day, while adult day services cost an average of $78 a day. Most insurance plans won’t cover the cost of respite care. However, there are resources you can turn to for assistance.

  • Informal respite. Informal respite with friends and family is normally a free or low-cost way to arrange respite care.
  • Medicaid. Medicaid doesn’t cover respite care as a standard benefit. However, many states offer a Medicaid Waiver program that does include coverage toward respite care. You can use this locator to find your state’s Medicaid office.
  • Veterans Benefits. If you receive a VA pension, you might also qualify for a benefit called Aid and Attendance that can be used for respite care. Many VA facilities also offer up to 30 days of respite care or qualifying Veterans.
  • Long-term care insurance. You can generally use your long-term care insurance policy to pay for respite care. However, this varies by policy, so it’s best to call your insurance company and check.
  • Sliding scale adult day services. Many adult services, especially those offered by community-based senior centers, nonprofit organizations, or churches, have sliding scale payment options. Some day service providers employ social workers or financial counselors who can help you find ways to cover the cost of respite care.

It can be difficult to choose the right respite care professional. Many family caregivers are anxious about leaving their loved ones with an unfamiliar person or in an unfamiliar location. It’s a good idea to take your time and choose a facility or professional you feel comfortable with.

If they’re able, it’s a good idea to have your loved one be a part of the interview process. Ideally, they can talk to any potential respite care professionals and ask questions of their own. After the interview, you can talk with your loved one and get their feedback before you make your final choice.

If you’re selecting an adult day services or residential care facility, it’s a good idea to ask:

  • What training does your staff have?
  • Do you have nurses or other medical professionals on staff?
  • What safety procedures are in place?
  • Are there daily activities offered?
  • Can you provide meals and snacks that meet my loved one’s dietary needs?

There are a few different ways to find respite care. If you know of any friends or family who might be able to provide care, they might be the best place to start. If not, you can use these resources:

  • Eldercare Locator. The Eldercare Locator will connect you with your local Area Agency on Aging. Your local Area Agency on Aging can help you secure respite care, find adult day services, and get other caregiver supper.
  • ARCH National Respite Network. The ARCH Respite Network can connect you to respite services in your community.
  • National Adult Day Services Association (NADSA). NADSA is a directory of adult day services around the country that you can use to find care in your community.

Respite care can help full-time family caregivers take a break. It’s a great way for caregivers to work, complete important errands, travel, and reduce the impact of caregiver burnout.

You can find respite care from family and friends, home care professionals, adult day services, and resident care facilities. Respite care generally isn’t covered by insurance, but there are resources available to help pay for care.

Complete Article HERE!

Palliative Care is Not Just for Dying People

The COVID pandemic has shown how palliative care can also be valuable for managing the pain and stress of illness

By Nora Macaluso

Palliative care can provide relief to people with severe, but not necessarily life-ending, health conditions. But often patients — and their doctors — don’t realize they can take advantage of a team-based treatment approach that may include social workers and community support.

“The big misconception about palliative care in general is that you need to be dying to get it,” said Dr. Andrew Esch, a palliative care specialist and consultant for the Center to Advance Palliative Care (CAPC) in Tampa, Fla.

The pandemic has helped counter that view, Esch and others told Next Avenue, as physicians see the benefits to people living with COVID-19 and their families. A palliative care team aims to take a holistic view of the patient’s world rather than focusing solely on treating the primary condition.

Dr. John Mulder, of Spring Lake, Mi., executive director of palliative care training center Trillium Institute, uses “life-defining” or “life-altering” to identify conditions that might benefit from palliative care.

“Getting palliative services doesn’t mean that you are somehow giving up on treating an illness. It’s quite the opposite.”

“Many, many individuals as they navigate their lives are going to be diagnosed with something that is going to forever change them, and it’s going to impact their longevity, impact their quality of life, and can place some burden of suffering upon them,” he said.

“What we do in palliative care is acknowledge the fact that we have something we can’t fix,” Mulder continued. “It might be modifiable, it might be manageable, but we can’t fix it.”

The Symptom-Based Approach of Palliative Care

He added, “You don’t have to be imminently dying to get palliative services. Getting palliative services doesn’t mean that you are somehow giving up on treating an illness. It’s quite the opposite.”

People with cancer, for example, can rely on the symptom-based approach of palliative care to build their strength so they’re better able to withstand chemotherapy, he said. People with conditions like multiple sclerosis or Parkinson’s disease can also benefit, as can those with Alzheimer’s disease.

Palliative care is “really appropriate for anybody with a diagnosis of a serious illness, regardless of prognosis,” said Brynn Bowman, CAPC’s chief executive officer. Most insurance plans cover palliative care just as they would any other specialist service. CAPC manages a website that can help patients find palliative care providers by ZIP code.

“What palliative care aims to do is provide relief from the symptoms and stress of the illness,” Bowman said. That may include managing pain and other symptoms, supporting the family, or helping people match their treatment options to their goals.

“The point is to improve the quality of life for patients and families,” she said.

“Palliative care is based on need, not prognosis,” Esch said, adding that the earlier the team gets involved, the better.

Misconceptions About Palliative Care

Misconceptions about palliative care don’t appear to be limited to the public. Physicians often associate it with end-of-life care and are hesitant to recommend it early in a patient’s illness journey, palliative care specialists said.

“It’s really clear that the medical system isn’t telling patients at the front line of their disease” what to expect, said Katy Lanz, chief strategy and product officer at Personal Care Medical Associates, a geriatric and palliative care company in Pittsburgh.

“Many well-intended, wonderful, smart physicians still are confused about what options people have,” she said.

Often, a doctor will diagnose a patient with a serious condition “but not tell them it’s a disease that one day ends their life,” Lanz said. “There are decisions associated with that disease we should talk about with them while they’re well.”

‘Long COVID’ Brings a Shift in Perspective

The COVID-19 pandemic has boosted demand for palliative care and shifted medicine in ways that are likely to bring the specialty to the forefront, practitioners said.

“COVID has shined a light on the value of palliative care, especially now that we’re seeing ‘long COVID’ patients,” said Esch.

The complex nature of the disease and its effects on family members and caregivers make COVID-19 well suited to a team-based approach. “There’s been a real acceleration” in reliance on palliative care since the pandemic started, Esch said.

“Our volumes are way up,” Esch said. “Most teams are busier now than they’ve ever been.”

According to Esch, a palliative care approach helps with the “brain fog” many people experience after spending time in an intensive-care unit, as well as the “lingering malaise” many COVID sufferers report.

The general malaise brought about by the pandemic has also brought palliative care into focus, Esch said.

“There’s almost a parallel epidemic of a mental health crisis right now,” and people with underlying conditions are seeing their symptoms exacerbated by stress even if they haven’t contracted the virus themselves, he said, adding, “There’s a lot of suffering right now, and that’s really the intersection we sit in.”

“COVID has helped both providers and patients really focus on the need to think about what’s most important to them, where they want to get their medical care, and how,” said Dr. Kim Bower, of San Diego, Calif., medical director of the palliative care program at Blue Shield of California.

“I think it’s opened up discussions,” she said. “It’s been a reason for families to sit down and discuss priorities.”

The pandemic has also addressed barriers to telemedicine, and “really let us see what can we do effectively by video visit and what do we really need to do in the home to meet the patient’s needs,” Bower added.

Health Insurers and Hospitals See Value in Palliative Care

In 2019, 72% of U.S. hospitals with 50 or more beds reported having a palliative care team, according to CAPC. That was up from 67% in 2015, 53% in 2008, and just 7% in 2001. The number of palliative care programs in community settings is also rising, said Bowman.

Some health plans are being proactive about palliative care, sorting through records and identifying members who might benefit from palliative care, Bowman said.

In California, insurers are required to cover home-based palliative care for Medicaid recipients under a law that became effective in 2018. Blue Shield of California, which started a palliative care program in 2017, now offers palliative services through many of its plans, Bower said.

“We’ve taken a multi-pronged approach” to reaching out to members, she explained. Physician and case manager referrals, along with research into medical records and discussions with providers, can identify those who might benefit, she said. Some may need something as simple as more time with a primary care provider or a telemedicine visit.

“I think about palliative care as a continuum, from the palliative care that can be provided by your primary care doctor to the type that can be provided by a specialist in your home,” Bower said. “The final part of that continuum would be hospice care.”

“COVID has helped both providers and patients really focus on the need to think about what’s most important to them, where they want to get their medical care, and how.”

“One of the gaps we have in the United States is, though we have a way to pay for hospice care, we don’t really have a great way to pay for palliative care providers” in a clinic or by telemedicine, Bower said.

The philosophy of palliative care — an interdisciplinary team taking care of the family as well as the patient — isn’t exactly matched with the existing reimbursement system, though that’s changing. “We’re starting to see a network of outpatient palliative care providers form,” Bower said. Still, “access is still spotty.”

Some 65% of Blue Shield members who take advantage of palliative care “discharge” from the home-based program after their symptoms stabilize or their needs are met, Bower said. They may still access services such as office-based palliative care visits, “but they don’t really continue to need that high-acuity palliative care.”

“I think it’s important for patients to be able to access palliative care across that continuum, whether that’s most appropriate in their primary care doctor’s office, a clinical setting, telehealth, or hospice,” Bower added.

The state’s passage of SB 1004, the law mandating coverage for Medicaid recipients, “was a huge win in terms of improving access,” Bower said. “I think having something like that nationally would be a great step forward for palliative care.”

Care for Caregivers and Families

Caregivers for people with serious diseases are themselves at risk for social isolation and exhaustion, and a palliative care team can connect them with community resources such as adult day care, according to Bowman. The team can also teach a caregiver about disease progression and how to manage pain and possibly avert a crisis.

For example, palliative care can provide immediate benefits such as alleviating symptoms so patients aren’t bedridden, said Esch.

“I could come up with about two-thousand and five hundred stories of patients who were in unmanaged pain,” he said. “You get that pain under control, it changes their life.”

As Esch sees it, one of the real values of palliative care is “coordinating care and communicating with the patient’s family and other clinicians” so “we’re not doing things in silos,” he said.

“Palliative care takes the lead and makes it so the patient feels they have four doctors and nurse practitioners taking care of them, and they have four of them talking to each other.”

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