Tag Archives: hospice

Coping with grief during the holidays

3-bottom, Citizen Journalism, Community Health, Kent County, Senior Living,

By Emmanuel Hospice

Emmanuel Hospice’s grief support services are open to anyone in the community on a grief journey regardless of whether they have a prior connection with the nonprofit organization or hospice care. (Emmanuel Hospice/Adobe Stock)

It can be hard handling the holidays – especially if you’re trying to process grief that accompanies the loss of a loved one.

But there are ways to make it through this season.

That’s not to say there’s a magic wand available to make your sadness vanish. But strategies and coping mechanisms do exist that can be put into place to make the holidays a little less stressful, even though you’re recovering from a loss.

“One of the first things to realize is that grief is a continuum,” says Ashley Huisman, bereavement coordinator for Emmanuel Hospice. “So, while one person might react very stoically and without a lot of tears, another might be extremely emotional.

“The important thing is not to judge; we don’t know what anyone is dealing with internally in that moment.”

Another thing to consider, says Huisman, is that not everyone processes grief according to the so-called five stages of grief: denial, anger, bargaining, despair and acceptance.

“Grief isn’t a standard, cookie-cutter type of thing,” she says, noting it’s just as common to bounce between these stages or even skip one as it is to follow them in a linear way.

Huisman offers the following tips on how to cope with grief at the holidays:

  • Manage expectations. Just because you’ve always been relied upon to bake that fancy dessert, the grief you’re feeling might compel you to pass this year. Even at the risk of thinking you’re letting someone down, take care of yourself first. “Pick out the tasks or customs,” says Huisman, “that have the most meaning for you.”
  • Make time for yourself. “Take a nap,” says Huisman. “Listen to music. Try to be reflective. Or even try to not remember for a while what you’re dealing with. The important thing is to check in with yourself and be sure you’re getting what you need.”
  • Give to get. When grief overwhelms, make a conscious effort to support others. It can help you create perspective and focus on another’s needs. Says Huisman, “It’s giving your heart a break.”
  • Memorialize your loss. Create a special ornament that honors the person gone. Continue to hang a stocking in their name, and slip a note inside telling them the ways they’re missed. Light a candle. Write a poem. Buy a gift they would have loved and donate it in their name to a cause. 
  • Reach out for help. Emmanuel Hospice, for example, offers workshops and support groups to help anyone in the community manage grief, regardless of whether they have a prior connection with the nonprofit organization or hospice care.

The nonprofit is offering free “Handling the Holidays” grief support sessions at various locations in the greater Grand Rapids area:

  • Monday, Dec. 5 from 1-2 p.m.
  • Wednesday, Dec. 14 from 2-3 p.m. 
  • Monday, Dec. 19 from 10-11 a.m. 
  • Wednesday, Dec. 21 from 10-11 a.m.

     

Those interested in joining are asked to contact Emmanuel Hospice if they plan to attend and get more information at 616-719-0919 or EHBereavement@emmanuelhospice.org. RSVPs are welcome up until the day of the event.

In addition to leading support groups, Emmanuel Hospice provides support through counseling, education and referrals to community resources to help individuals cope with all stages of grief before, during and even after the holidays. More information is available at EmmanuelHospice.org/grief-support.

Though it sounds simplistic, Huisman encourages people grieving through the holidays to “take them one day at a time. Try not to be anxious.

“Most of all,” she says, “look for things that will give you comfort. And let the rest be.”

How to navigate hospice services and access care

3-bottom, Citizen Journalism, City of Kentwood, Community Health, Senior Living, ,

By Emmanuel Hospice

Many of us realize that hospices are there to serve us.

It’s never too early to inquire about hospice care. With just a click or a call, you can learn about services available, eligibility, costs and more to find a good fit. (Adobe Stock)

But sometimes, it’s difficult to break the ice. How do you reach out – with a call or a click? And how do you express the need? With whom do you ask to speak? And what exactly do you say?

In a perfect world, there are protocols in place to accommodate all the above and more. And you should be able to reach out anytime – day or night, weekday or weekends, even on a holiday.

“At Emmanuel Hospice, we understand that life doesn’t stop when you have a need for hospice,” says Elizabeth Mangiapane, a patient access specialist there. “That’s why any time you call our main line, it’s going to be answered on a 24/7 basis. Easter Sunday? Middle of the night? It doesn’t matter. You will connect with someone who can help.”

Mangiapane emphasizes that a referral to Emmanuel can originate in more than one way. Often, a physician will make the connection. But sometimes, family members serving as caregivers become involved at the outset, and naturally they have questions about eligibility, timing and more.

While a physician’s order is required to perform a formal assessment, a representative from Emmanuel will welcome the opportunity to meet with a patient and/or their loved ones if they simply have questions.

In either case, “we do all the legwork,” Mangiapane says. If it’s determined someone qualifies, the hospice care provider will integrate the patient’s physician and medical history into the equation as needed.

“We’ll set up meetings. We’ll work with the doctors. We are glad to serve in any capacity that lessens the burden on that patient, on that family.”

Mangiapane notes that there’s never a “wrong time” to inquire about hospice. Too often, people will act on the misconception that hospice is only “for the last few days a patient has.”

On the contrary, “We’re trying more than ever to educate the community on how it can be for a much longer time period, so that we might focus earlier not on the quantity of life someone has left, but the quality of life that remains.”

For someone who lives in a nursing home or assisted living facility, that institution may have a working relationship with a preferred provider. But Mangiapane explains that a patient and their family have the right to choose any hospice, and shouldn’t feel pressured.

Mangiapane says it’s important you come away with a full understanding of the services a hospice provides. At Emmanuel, for example, a full slate of complementary services is available – pet visitors, massage therapy, music therapy, virtual reality and more.

Location of care is important to ask about, too. A common misconception is that hospice is a place you go to, but for most providers, hospice care can be provided anywhere. With Emmanuel, it can be in the hospital, a care facility or wherever a person calls home.

Cost is another consideration. Medicare and most commercial insurances will cover 100% of virtually everything provided by hospice – medications and visits, personal care, counseling and other services – but there are some limitations. A phone call can help you discover where you stand.

“Make your choices based on the needs of the patient and family,” says Mangiapane. “You want what’s right for you, and that can look different from person to person.”

For more information, visit EmmanuelHospice.org or call 616-719-0919.

World Hospice and Palliative Care Day offers opportunities to reflect, reach out

Citizen Journalism, Community Health, Health, Non-Profits, Senior Living, ,

By Emmanuel Hospice

Pictured is an Emmanuel Hospice patient receiving massage therapy, which is one of the nonprofit’s complementary therapies that can be used to reduce pain, lower stress and manage fatigue. (Courtesy, Emmanuel Hospice)

For caregivers and survivors left in the wake of some six million who died during the COVID-19 pandemic, there’s more than grief and anxiety to consider.

That’s the message from organizers of World Hospice & Palliative Care Day, celebrated Saturday, Oct. 8, to commemorate and support hospice and palliative care around the world with one voice advocating quality of life and equitable healthcare for all.

It’s also an opportunity to help people understand the difference between hospice care and palliative care, emphasizes Michele Siegel, a social worker for Emmanuel Hospice.

“A lot of people group the two together, but there are distinct differences,” she points out. “The biggest one is that with palliative care, you typically don’t have a life expectancy of six months or less to qualify for symptom management.”

At Emmanuel and other hospices, the primary emphasis is on providing holistic care and support for someone seeking to live as pain-free and alert as possible throughout a serious illness. Medications, equipment, supplies and care relate to pain and symptom relief.

 

That contrasts markedly from palliative care, where the patient is likely still fighting their illness and continues employing strategies tied to the prospect of cures.

“Does hospice provide palliative care?” Siegel poses. “In a sense, yes. We provide palliative care in the sense that our goal is to provide comfort and care. But with hospice, you also have a terminal diagnosis, and so you’re not seeking curative treatments.”

Sometimes, people suffering from the same maladies can be receiving either hospice or palliative care. They often include those diagnosed with cancer, heart disease and other chronic conditions. The care they choose to receive determines whether they’re receiving palliative or hospice care. If they’re fighting their condition with therapies or clinical trials or other options designed to sustain life, that’s palliative care. If they’re mostly managing pain and symptoms and focused on “making the best of the time you have left,” says Siegel, that’s subscribing to hospice care.

According to Siegel, it’s important to rely on healthcare workers you trust – as well as friends or family members who may be serving as caregivers – to both understand and act on options available. In either case, she says, it’s important to find someone who wants to “coach but not force” decisions affecting care.

The organization supporting World Hospice & Palliative Care Day – online at theWHPCA.org – offers a digital toolkit on its website to help inform and educate those interested in the annual observance.

Siegel applauds such measures, noting that individual hospice care providers like Emmanuel also go to great means to educate people on who they are, what they stand for and the services they provide.

“We’re always just a click or a phone call away, and eager to inform people wondering about their options,” she says. “It’s not always easy wading through all the information available. We’re here to help with that.”

For more information, visit EmmanuelHospice.org or call 616.719.0919.

What is hospice care?

3-bottom, Citizen Journalism, Community Health, Health, Senior Living,
Courtesy Vista Springs Assisted Living

By Vista Springs Assisted Living


Many people have heard the term “hospice” without really understanding exactly what it is or what hospice care provides. Those who don’t understand the term have probably never had a reason to think about it, and most don’t think about it until they are in a situation that requires it.


But, hospice care is something everyone should understand because you never know when a family member may require hospice services. But, before we answer, ‘what is hospice care?’ It’s important to point out that there are a lot of misconceptions about hospice. So, let’s start by talking about what Hospice care is NOT.

Hospice is NOT:

Just a place or facility

Whether you desire the full-time care of a Hospice facility or the convenience of a team of caregivers in the comfort of your home or in an assisted living community, hospice care offers flexibility.

Just for cancer patients

A long-standing myth, hospice provides end of life care to those with a wide range of end of life conditions such as kidney failure, heart failure, and advanced dementia or Alzheimer’s.

Just for the patient

Many hospice services provide not only medical care for the patient but grief counseling and after death assistance for the family.

Permanent

Hospice is not a permanent choice. Anyone in hospice care may choose to leave and receive curative treatments at any time.

So, what is hospice care?

Hospice is medical care geared toward maintaining and improving quality of life for an individual whose illness or condition is likely incurable. Hospice is offered as an option when all curative measures have been exhausted and the life prognosis is six months or less.

Hospice IS:

Well-rounded care

Hospice care doesn’t just focus on one aspect of end-of-life care, like pain management. Pain management is part of it, but hospice professionals look at the whole life of the patient. They want to make them comfortable, help them engage in life as much as possible and help ease their minds and hearts. To do that, they provide not only medical care but emotional care as well.

A team of caregivers

Hospice isn’t just a single individual. To provide proper, end of life care, a team of professionals works together to administer medications, provide support, give physical therapy, and provide all the services that account for a fulfilled life, all the way to the end.  

Respite care

Even those individuals who have vowed to care for their sick loved one sometimes need a break. In order to provide the best care possible, they need to be able to step away from time to time and leave their loved one in the care of someone they trust. Many hospice providers offer respite care so, even if you haven’t turned to a facility for full-time hospice help, you can still get the help you need when you need it.

Affordable

Many insurance plans cover a portion of the expense for Hospice care but for those that don’t, it is “covered by Medicare (through the Medicare Hospice Benefit), Medicaid (in most states), and The Veteran’s Health Administration,” according to the American Hospice Foundation’s website.


While different programs may offer different benefits, you can find a list of the services most Hospice Care Services provide on the the Hospice Foundation of America’s website. You should be sure to ask any facility or service you are considering what exactly they provide. 


Reprinted with permission from Vista Springs Assisted Living.



Many Americans face pain, depression in their final year

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By Amy Norton, HealthDay

 

For a growing number of Americans, the final year of life is marked by pain, depression and other distressing symptoms, a study has found.

 

Experts said the study, published in Annals of Internal Medicine, highlights disturbing shortcomings in the U.S. health care system.

 

Researchers found that between 1998 and 2010, the number of Americans who suffered pain in their last year of life rose from 54 percent to 61 percent.

 

Meanwhile, the prevalence of depression rose from 45 percent to 57 percent, while other symptoms — such as breathlessness, confusion, severe fatigue and incontinence — either increased or did not improve.

 

“These findings are troubling,” said senior researcher Dr. Karl Lorenz, of the Pardee RAND Graduate School and the University of California, Los Angeles.

 

The increase in end-of-life symptoms, Lorenz said, has occurred despite national efforts to improve end-of-life care, dating back to the 1990s.

 

Those efforts have made a difference. The number of Americans in hospice care doubled between 2000 and 2009, the study noted. Hospice care focuses on easing symptoms and improving quality of life for people with a terminal illness.

 

But often hospice care isn’t offered until the last few weeks or days of life, Lorenz said.

 

“It’s often ‘tacked on’ to more-intensive care,” he said.

 

However, another expert said the findings are not actually about the typical American’s final year of life — because many people with chronic diseases are suffering these symptoms long-term.

 

“I think the findings are very valid, but the conclusions about what they mean are not,” said Dr. Sean Morrison, who directs the Hertzberg Palliative Care Institute at Mount Sinai Icahn School of Medicine in New York City.

 

“I think you’d see a high prevalence of these symptoms if you looked at older adults’ last two years of life, or last three, or last five,” Morrison said.

 

The issue, he said, is that more and more Americans are living longer with chronic ills — from heart and lung disease, to painful arthritis, to Alzheimer’s disease. At the same time, the health care system has grown increasingly specialized and “organ-specific,” with less focus on primary care.

 

“We’re doing a very poor job addressing the multiple health conditions so many older Americans have,” Morrison said. “We’re focusing on treating organs, and not on improving people’s quality of life.”

 

Morrison said the health care system — including medical schools — needs to pay much more attention to palliative care.

 

Palliative care refers to therapy that focuses on easing physical or psychological symptoms, rather than curing a disease. Hospice care, which is intended for people with a limited time to live, is one form of palliative care.

 

Other forms, though, can start as soon as a serious medical condition is diagnosed, and given along with treatments aimed at battling the disease. Usually, a team of providers, including nurses, nutritionists and social workers, is involved.

 

But Morrison said that to many people, including doctors, “palliative” is synonymous with dying. So it’s often not offered, even if it’s locally available.

 

“Other research shows that the overwhelming majority of Americans do not have access to high-quality palliative care,” Morrison said.

 

The current findings are based on a periodic health survey of older Americans. Between 1998 and 2010, slightly more than 7,200 study participants died, and their family members were asked about symptoms their loved one had suffered in the last year of life.

 

Over time, problems like pain, depression, periodic confusion and incontinence grew more common. Other symptoms, such as fatigue and severe weight loss, held fairly stable.

 

Lorenz said part of the increase could be due to awareness. More doctors may be asking family members about those symptoms — which would be a good thing, he said.

 

But the fact that pain and other distressing symptoms are so common is disturbing, he said.

 

Morrison agreed. “This really is an indictment of the health care system,” he said. “And the public should be outraged.”

 

He and Lorenz suggested that older adults ask their doctors about any palliative services available for their symptoms — at any point in the course of a disease.

 

Medicare covers hospice care, and many Medicare Advantage plans pay for other palliative services, Morrison noted.

 

But relatively few research dollars, he added, go into palliative care. “We invest so much in finding disease cures,” Morrison said. “We should also be investing in making life better for the people living with these diseases right now.”

 

Reprinted with permission from Spectrum Health Beat.

Caregiver challenge: Needs double as end of life nears

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By Maureen Salamon, HealthDay

 

Reliance on caregivers doubles as people near death, and half of those caregivers—typically unpaid family members—report having no time for themselves, a new study indicates.

 

The research used a nationally representative sample of about 2,400 older adults in the United States. The study authors found that caregivers provided nearly twice the number of hours of help each week to dying individuals than to those not at the end of life.

 

“We were certainly aware when dealing with end-of-life care that families are mostly involved, but we couldn’t quantify that prior to this [research],” said study author Dr. Katherine Ornstein. She’s an assistant professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.

 

More than 34 million Americans provided unpaid care to an adult aged 50 or older in the past 12 months, according to 2015 figures from the National Alliance for Caregiving and AARP. Most caregivers are female.

 

Ornstein and her team drew from two nationally representative surveys in which caregivers in the United States reported their experiences caring for dying adults over age 65. The researchers contrasted this data with that of other caregivers providing ongoing care.

 

Older adults were classified as being at the end of life if they died within 12 months of the surveys’ completion.

 

The study found that dying adults had an average of 2.5 caregivers assisting them. Those near the end of life received 61 hours of help per week compared to 35 hours of help per week for older adults who weren’t at the end of life.

 

More than one-third of the end-of-life caregivers reported physical difficulty related to their duties. Just over half reported having no time for themselves. These figures were 21 percent and 40 percent, respectively, for other caregivers.

 

Nearly nine in 10 caregivers are unpaid, according to the study. For end-of-life caregivers who were spouses, nearly two-thirds reported receiving no help from family or friends.

 

“What we see now is, on average, there are 2.5 people helping someone at the end of life. You can imagine if they don’t have that, it’s much more difficult,” Ornstein said. “When spouses are serving as caregivers, the majority are reporting doing it alone and have the [most challenging] consequences.”

 

Barbara Coombs Lee is president of Compassion & Choices, a Washington, D.C.-based advocacy organization for patients’ rights and end-of-life issues. She pointed out that the caregivers surveyed in the new study didn’t necessarily know ahead of time that the person they were caring for was at the end of life.

 

This lack of awareness may have increased caregivers’ stress levels, she said.

 

“This told me the caregivers were probably struggling, not knowing this was an end-of-life situation. Our [organization’s] research indicates that uncertainty about decision-making is an inherent and extremely powerful source of stress,” Lee said.

 

“I would guess that many of these people didn’t know they were dying … so they pursued heroic, torturous, futile treatment,” she added. “Often the default decision [to continue treatment] increases the caregiver burden.”

 

Ornstein said she hopes greater awareness of the family burden of caregiving, especially at the end of life, comes from her research.

 

“We need to think about expanding access to palliative care services, which can help facilitate the delivery of supportive services to families earlier,” she added. “And we can see how we need to provide more paid family leave so families can provide the support we’re pretty much expecting them to provide.”

 

Lee agreed with the need for expanded access to hospice and palliative care.

 

“One of the big barriers to access to hospice is [an] information gap,” Lee said. “People don’t understand that hospice is appropriate to them in their journey in their illness. Palliative care utilization would go up if people had more candid conversations and were privy to information that physicians have but aren’t sharing.”

 

The study was published in the journal Health Affairs.

 

Reprinted with permission from Spectrum Health Beat.

When Should I Call Hospice?

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File photo

By Peg Cochran, Holland Home

 

One of the statements hospice workers hear most often is “I wish I’d called hospice sooner”. What is hospice care and when should I seek it out?

 

What is Hospice Care?
Hospice care is a set of specialized services to help patients and their loved ones cope with advanced or terminal illness. The focus of hospice care is on improving the patient’s and families’ quality of life though a specialized team which can include doctors, nurses, home health aides, social workers, spiritual care providers and other professionals like nutritionists and therapists. Hospice care can provide support and comfort for both patients and families.

 

Benefits to the Patient
It’s easier to face changes in life when you are prepared. Bringing hospice on board early in the process of a long-term illness means you won’t be scrambling to get services when you reach a crisis and you’ll be able to take advantage of all the support hospice care offers.

 

“Starting hospice early offers the patient better quality of life, especially since their pain and problematic symptoms can be brought under control. Some hospice patients still drive and still go to work,” says Rene Wheaton, administrator of Faith Hospice. “When they reach a point where they need us, we’re already there to help.”

 

File photo

Benefits to Caregivers
Hospice offers benefits to caregivers as well. Caregivers can become burned out, particularly If the patient has waited too long to sign on to hospice care. Hospice staff can provide help.

  • Hospice staff can educate the caregiver, as well as answer questions that may come up — for example, can the patient be safely left alone or can they still drive?
  • Hospice nurses and aides monitor and recognize changes in the patient’s condition that may not be obvious to the caregiver.
  • Hospice staff includes trained volunteers able to provide short-term respite for caregivers.

Hospice Support
Hospice brings an entire team of professionals and volunteers ready to provide help and support.

  • Medical professionals, including doctors who are board certified in hospice and palliative care, as well as nurses trained in hospice care. The medical team is experienced in pain control and symptom relief.
  • Chaplains are available to provide spiritual support to the patient and their family, if desired.
  • Social workers can help with the practical and emotional needs of the patient and their family.
  • Through hospice, aides can come to your home to help with personal care.

“There are so many benefits to bringing in hospice as soon as a patient has received a life-limiting diagnosis,” said Wheaton. “The services provided can greatly increase quality of life for both the patient and their family. We have even had people go off hospice because they have improved so much, often because they were able to leave the hospital and return home to familiar surroundings and loving family members.”