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Mesothelioma Patients to Learn about Hospice

Published in mesothelioma.net

Palliative care experts are using the occasion of Aretha Franklin’s death to urge mesothelioma patients and others diagnosed with terminal illnesses to learn about hospice care and understand that it provides far more than just a “days before” benefit. Franklin’s family announced that she would be entering hospice care just three days before she died, less than the national median length of stay in hospice which is just slightly over three weeks and far less than the amount of time that the service is available. According to palliative care experts, when announcements are made that celebrities are entering hospice just days before their deaths, it confirms the public’s impression that hospice is a place to go before you die, rather than its actual goal of anticipating, preventing and managing patient suffering. The earlier mesothelioma patients enter hospice care, the more benefit they are able to get and the greater the improvement in their quality of life.

People diagnosed with mesothelioma who are considering hospice care would do well to learn about those celebrities who have used it to its fullest: columnist and author Art Buchwald called the five months he was in hospice “the best time of [his] life”, where he was able to continue working, seeing friends and dying with a minimum of discomfort, in a warm and comforting environment. Palliative care professionals are working to spread this news and reframe the narrative about what hospice care from “nothing more we can do” to “living as well as you can for as long as you can” writes Jennifer Moore Ballentine, executive director of the CSU Institute for Palliative Care, based at Cal State San Marcos.

In an article she wrote for the San Diego Union Tribune, Ballentine urges family members and physicians alike to remember that palliative care is available for mesothelioma patients and others with a life expectancy of six months or less who are no longer seeking treatment. Unfortunately, a study in the AMA Journal of Ethics found that specialty physicians are less likely to suggest palliative care than are family and internal medicine clinicians. Much of this is due to the challenge of having difficult conversations.

If you or someone you love has been diagnosed with mesothelioma, you are already aware that the rare form of cancer has no cure. If you would like information on the benefits of palliative care or any other resources to support you as you face this challenging disease, contact the Patient Advocates at Mesothelioma.net today at 1-800-692-8608.

 

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Five Reasons Home Health Care Is on The Rise

Published in Third Age by Tina Marrelli, MSN, MA, RN, FAAN

If you have tried to get care at home for a loved one, it may have been a difficult and time-consuming process. You are not alone. I also had the experience of trying to find care for an older adult family member, and though I have worked in home care for many years, it is not an easy experience. According to the National Association for Home Care and Hospice, around 12 million people in the United States (U.S.) receive home health care from more than 33,000 provider organizations. As the population continues to grow, that number will likely more than double by 2050, increasing to 27 million.

Here are five factors contributing to the complexity.

*Aging of the population. This has been referred to as the graying tsunami, and for good reason. The projection that roughly 10,000 baby boomers will turn 65 each day, and that this trend will continue for the next 19 years, is staggering, no matter how many times it is repeated.  In the U.S., one of the fastest growing segments are those people who are age 85 or older. Called the “oldest old” by the National Institutes on Aging (NIA), they constitute the most quickly growing segment of the U.S. population. And now think about how many people you know who are in their 90s and maybe have passed the 100 mark? My sweet father-in-law moved in to our home when he was 93 and lived with us for three years – until he died at our home with care and hospice support. This scenario is not unusual. And think about the health implications in the oldest old with the frailty and other challenges that come from living to that age.

*Home care means many things. There are home health agencies certified by Medicare and Medicaid. These are agencies that provide what are called “intermittent” visits by nurses, aides, therapists and/or social workers. These services are provided under a physician-directed plan of care. There are specific rules related to coverage and care provided and like any medical insurance program, there are covered and non-covered services. There are also private duty organizations that provide services, such as a “shift” of 4 or 8 hours. In this instance, a family may contact a number of organizations to obtain an aide to be with and care for a family member who might have personal care needs, such as a need for assistance with bathing, dressing and/or meal preparation.  There are also home care services that are provided to very ill or technology-dependent people at home, and they may need specialized nursing care, such as that provided by a registered nurse.

*Lack of enough trained caregivers. According to the Bureau of Labor Statistics, (BLS) home health aides and personal care aides are two of the fastest growing jobs. In fact, according to the BLS, their job outlook, defined as the projected numeric change in employment from 2016-2026, is 41 percent; which is much faster than average. The employment increase is estimated at 1,208,800 more aides!  Varying factors contribute to organizations having trouble finding and then retaining more aides.

*Chronic conditions and the growing complexity of care. According to the Centers for Medicare and Medicaid Services, it is estimated that 117 million adults have one or more chronic health conditions, and one in four adults have two or more chronic health conditions. These conditions can include cardiovascular (heart) conditions, such as heart failure, respiratory (breathing) conditions such as COPD (chronic obstructive pulmonary disease) or asthma, arthritis, cancer, depression, diabetes and more. Such chronic diseases also demand trained caregivers to help people better manage their health conditions.

*People wanting to age in place. This may be their home or may be an assisted living residence. It was not so long ago that people were cared for primarily at home and oftentimes died at home. Many patients receive care in their homes through the Medicare hospice benefit. In fact, most hospice care is provided in the home setting. Wanting to age in place is a great goal, although it may not always be realistic, depending on the person, the care needs and safety concerns.

So all these kinds of care at home are home care and are increasing the need for these specialized services. The term “home” becomes flexible as people seek the “best” situation for themselves and their loved ones to age in place. There is no question that home care is more complicated than people think. When finding care for yourself or a loved one, ask for (and check) references, read reviews and do your homework. Some of the best knowledge is local, so ask your neighbors and friends who they have worked with when care was needed for their family member.

Tina Marrelli, MSN, MA, RN, FAAN is the author of the Handbook of Home Health Standards: Quality, Documentation, and Reimbursement (6th edition, 2018) and A Guide for Caregiving: What’s Next? Planning for Safety, Quality, and Compassionate Care for Your Loved One and Yourself. 

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Those in hospice need additional care

Published in Picayune Item by Leah McEwen

Those who are in hospice care often have many needs, but don’t always have access to the assistance required.

One of my grandmothers developed Alzheimer’s about ten years ago and lived with it for several years. She was in her 60s when she received the diagnosis. While the onset of the illness was slow, when it worsened, it became unmanageable.

She forgot who we were, disappeared from her home several times and eventually became a danger to herself. As her condition worsened, she also developed several other illnesses, which made taking care of her impossible for my grandfather. Thankfully, my family was able to pay for outside help to provide the care she needed until she passed away.

Unfortunately, this isn’t the case for everyone. Many elderly adults don’t have family to care for them, and do not have the funds to pay for outside help such as a nursing facility or in-house nurse.

Many hospice services fill this gap by providing care that is paid for through donations, or government programs like Medicare and Medicaid. There are also non-profit organizations that can provide everyday necessities like groceries.

I recently met a man in his early nineties who had saved enough money to pay for his livelihood until he reached 85-years-old. He said he hadn’t expected to live past that point, but when he did, he found himself penniless and with no one to turn to.

With the help of local volunteers and nonprofit organizations who discovered his need, he was relocated to a better home, his utilities were paid and he was provided with groceries and medical coverage.

Organizations that help elderly adults and hospice patients in need improve the quality of life for patients and their families.

 

 

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Better Sleep for Stressed-Out Caregivers

Those who care for people at the end of their lives tend to struggle to sleep well. Lack of sleep makes it challenging to care effectively, respond appropriately to emergent situations, and give loving care. When you are a caregiver or working with caregivers, it’s important to consider sleep.

Caregivers May Struggle to Sleep

While anecdotal evidence suggests that almost all caregivers of end-of-life patients struggle with sleep, there’s not a lot of research available on how to effectively help them. The general consensus seems to be that (1) caregivers usually don’t sleep well, (2) current strategies for helping people sleep often aren’t effective for them or aren’t something they can implement because of their caregiving situations, and (3) there’s a need for more research to help this population.

Another study suggests some reasons why caregivers might struggle with sleep. These include a disturbed sleep routine, because many caregivers are up with their patients in the night, attending to their needs or simply checking on them.

Caregiving can also be a burden, and many caregivers end up in a depression. It’s difficult to watch a loved one deteriorate before your very eyes. Finally, many caregivers struggle with physical health issues of their own, often due to their caregiving tasks. They may be too sedentary, eat poorly or have other underlying health issues that affect their sleep.

Simply understanding why caregivers don’t get enough sleep may be the first step toward helping them rest. Here are some tips that may promote sleep.

Getting Better Sleep

Getting good rest can be tricky for caregivers, but here are some things that can help.

Re-think the sleep schedule. If the patient always wakes or needs checking in the night, a caregiver can do their best to try to get at least 3 hours of sleep on each side of a wake-up. This schedule can mean going to bed earlier or sleeping in but will help caregivers get the deep sleep and the REM sleep that they need to function well.

Get a comfortable bed. There’s not much worse than trying to sleep on a poor-quality mattress. While a caregiver’s time and money are valuable, it’s worth the effort and expense to find a mattress that they want to fall into at night.

Make the bedroom dark and quiet. This setup promotes sleep and makes it less likely that the caregiver will wake up prematurely or lie awake in bed, unable to sleep.

If you are a caregiver or you are working with caregivers, know that sleep shouldn’t be negotiable. Somehow, caregivers need to figure out how to get the rest that they need.

 

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‘They Deserve It’: In Foster Homes, Veterans Are Cared For Like Family

By Patricia Kime for Kaiser Health News

With the motto “Where Heroes Meet Angels,” a small Veterans Affairs effort pairs vets in need of nursing home care with caregivers willing to share their homes.

Ralph Stepney’s home on a quiet street in north Baltimore has a welcoming front porch and large rooms, with plenty of space for his comfortable recliner and vast collection of action movies. The house is owned by Joann West, a licensed caregiver who shares it with Stepney and his fellow Vietnam War veteran Frank Hundt.

“There is no place that I’d rather be. … I love the quiet of living here, the help we get. I thank the Lord every year that I am here,” Stepney, 73, said.

Caregiver Joann West calls taking care of veterans Ralph Stepney (left) and Frank Hundt at her home in Baltimore a “joy.” “They deserve it,” she says. (Lynne Shallcross/KHN)

It’s a far cry from a decade ago, when Stepney was homeless and “didn’t care about anything.” His diabetes went unchecked and he had suffered a stroke — a medical event that landed him at the Baltimore Veterans Affairs Medical Center.

After having part of his foot amputated, Stepney moved into long-term nursing home care at a VA medical facility, where he thought he’d remain — until he became a candidate for a small VA effort that puts aging veterans in private homes: the Medical Foster Home program.

The $20.7 million-per-year program provides housing and care for more than 1,000 veterans in 42 states and Puerto Rico, serving as an alternative to nursing home care for those who cannot live safely on their own. Veterans pay their caregivers $1,500 to $3,000 a month, depending on location, saving the government about $10,000 a month in nursing home care. It has been difficult to scale up, though, because the VA accepts only foster homes that meet strict qualifications.

Read full story

 

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Advance Care Planning: Reminder for YOU to Have the Conversation

By Cozzie M. King, National Coalition for Hospice and Palliative Care

The scenario generally plays out the same. A person becomes ill…too ill to make decisions for themselves…too ill to communicate with the attending medical staff. Nearby family rush to the hospital bedside. The physician explains what’s happening to the family. Things aren’t looking good or the medical terminology is not easy to understand. After some time, the family is left to make decisions for their seriously ill loved one. Decisions that have not been discussed or thought about prior to this point. What do we do? Who has the final say? Things normally go downhill from here. You’ve seen it. I’ve seen it. Medical staff dread it. No one wins. Making healthcare decision at the hospital bedside is not the right time. These conversations need to happen before the crisis, not during.

Speak Up

As a mom, sister, daughter, past and future caregiver, I understand the importance of having conversations about my future healthcare decisions with my family and friends. These conversations can be hard to begin. However, there are many resources, tools and games that help families have these talks in creative ways. Over the years, I have facilitated several talks on how to plan and communicate your future healthcare decisions.  One of my personal favorite resources is the Speak Up video. This video is one of the tools I consistently use when explaining why it’s so important to have the conversation and complete an advance directive.  I encourage you to post and share this video with your family and friends on Facebook. They’ll thank you later. The message is short and simple.  Check it out:

Click to watch NHDD Speak Up Video

As we advocate for more families to participate in advance care planning, keep it simple. I remind my family and friends that advance care planning is much more than completing a form. It really is more about the conversations you have before and after any document is completed.

Lead By Example

April 16th is National Health Care Decisions Day (NHDD) and this year’s theme is, “It always seems too early, until it’s too late.” NHDD is a call to action for EVERYONE to:

→Think about your beliefs and values,
→Write them down,
→Choose a healthcare proxy (someone who speaks for you if you are not able),
→Complete an advance directive, and
→Share with your healthcare proxy, family and doctors.

The purpose of NHDD is to inspire, educate and empower the public and providers about the importance of advance care planning – and most importantly, to encourage people to express their wishes regarding healthcare and for providers and health care organizations to respect those wishes, whatever they may be. As someone in the health care field,  be sure to complete your advance directive and encourage your colleagues and loved ones to do the same. Practice what you preach. Read related story in TMC News

 

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Help Your Employees Deal with Grief

Published in MultiBriefs By Lisa Mulcahy

It’s a common scenario, unfortunately. One of the best members of your team suffers the loss of a spouse, parent, sibling or child. Corporations, of course, allow for some bereavement time, but experts say the process of working through the initial stages of grief can last on average between six months and a year, and in some cases even longer.

How do you handle it if this employee breaks down in tears in a meeting? What if his work is temporarily not up to par? How can you best encourage your staff to show compassion and support for her at this difficult time?

Here are five compassionate strategies for helping your workers cope emotionally as they navigate their duties as productively as possible through a profoundly difficult time.

  1. Send condolences

First, it’s a must to send appropriate condolences to your employee in the early days of her initial bereavement. This means a heartfelt sympathy card and flowers sent on behalf of your entire staff. Your employees should also be allowed and encouraged to express their individual sympathy as well.

If a wake and/or funeral is open to the public, attending these services is a strong and supportive gesture you and your employees can also make to show care and respect.

  1. Have a productive face-to-face

The day your employee returns to work, ask him to sit down with you in your office. Express your condolences with sensitivity, and express your sincere desire to support him as he re-acclimates to the workplace.

Ask him directly what he needs. Is it a gradual re-entry into his responsibilities? If so, delegate some of his project work temporarily. Is it more time off? Work with him to see if personal days or vacation time could be used for this purpose.

Listen to what he tells you, and let him know you are here to make things as easy as possible. The Society For Human Resource Management has published some helpful information regarding respite time for grieving workers.

  1. Implement a kindness policy

Encourage your staff to show compassion and offer assistance openly to this employee — and let everyone know this policy will apply to anyone dealing with a loss in the future as well. Grieving professionals repeatedly report in studies that compassion shown by co-workers has a powerful effect on their psyche as they heal, and lets them feel supported so they are as productive as possible. Two interesting pieces of research touch on this concept.

Your employee may become emotional at times during her workday, maybe even crying openly because she can’t help herself. Never judge this understandable behavior — instead, let her know it’s perfectly fine to excuse herself for a short time whenever she needs to. Encourage her co-workers to lend her a hand with supportive words whenever they think she’s struggling, too.

  1. Double-check without judgment

Take the time to follow up on your employee’s work to make sure there are no major mistakes (there will probably be minor ones), but don’t make a big deal out of doing so. If bigger mistakes happen, reassure your employee that you understand this is a temporary situation, and assign a second worker or workers to kindly help him with tasks. This technique can quickly get him back on track without any awkwardness.

  1. Praise her strength

Grieving people can use all the positive feedback you can provide. Don’t hold back on a compliment as to how well she handled a presentation — this will give her confidence as she tackles her next task. At the same time, don’t overdo your praise — your employee doesn’t want to feel singled out as “the griever” in your office who needs to be handled with kid gloves.

Treat her kindly but normally. You’ll be helping her feel more like herself, so she can concentrate well, accomplish more and continue to feel better.

Lisa Mulcahy is an internationally established health writer whose credits include the Los Angeles Times. Redbook, Glamour, Elle, Cosmopolitan, Health, Good Housekeeping, Parde and Seventeen.

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Another Reason to Avoid Heavy Drinking? Dementia

Dr. Arefa Cassoobhoy, a practicing internist, Medscape advisor, and senior medical director for WebMD in a recent Medscape Morning Report 1-minute news story for primary care, reported that heavy drinking can lead to many health issues. 

Dr. Cassoobhoy shared a new study[1] that looks at alcohol use and dementia. The French observational study included over 1 million adults diagnosed with dementia between 2008 and 2013. It found that of 57,000 cases of early-onset dementia, 39% were due to an alcohol-related condition like Wernicke-Korsakoff syndrome, liver disease, epilepsy, or head injury. And 18% had an additional diagnosis of alcohol-use disorder.

Overall, alcohol-use disorders were associated with a three-times greater risk for all types of dementia.

The researchers concluded that heavy drinking is the strongest modifiable risk factor for dementia. Dr. Cassoobhoy says this should motivate us to focus on early screening, brief interventions, and treatment to help our patients.

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Family is biggest influencer of older adult housing and care preferences: study

Author: Lois A. Bowers, Senior Editor, McKnight’s Senior Living

Family support is the biggest influencer of housing and care preferences among older adults, according to a study published Wednesday (March 7, 2018) in the Journal of the American Geriatrics Society.

Often, the authors found, older adults changed their preferences based on the concerns of family members or a wish to avoid “being a burden” to others. This basis was especially true for preferences regarding the places where people wished to receive care — for example, at home or in a residential care setting, they said.

The researchers, all of whom were affiliated with the Cicely Saunders Institute of Palliative Care Policy and Rehabilitation at Kings College London, examined 57 previous studies about the preferences of older adults with advanced illness. They included research that investigated preferences for where people wanted to be cared for, the kinds of communication and decision-making they wanted and the quality of life they hoped to have over time.

Family involvement is key in care decisions

Although support from family was the most important influence on their care preferences, older adults usually formed their preferences based on several other factors, too, including their experiences related to previous illness and caring for others as well as having a serious illness, according to the study.

 

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The Other Side of the Conversation

Author: Christopher M. Thompson, MD, HMDC

This article originally was published in Winter 2017 NewsLine.

In this post, a physician connects his personal and professional caregiver roles.

As palliative care providers, we spend our careers talking about end-of-life care and helping families make difficult choices about life and death. Have you ever been on the other side of the conversation, answering questions and making decisions for your own loved ones? I have cared for thousands of patients at the end of life, but recently I’ve been on the other side of that conversation – twice.

My first conversation began with “Momma,” my wife’s 91-year-old paternal grandmother. Her decline started with a kidney stone, which then led to urinary tract infections and tremendous pain. Momma made the decision to have lithotripsy. During the procedure, she had respiratory distress and required intubation. Her heart was not strong enough to tolerate this “routine” procedure. She developed right-sided heart failure and pulmonary edema. Doctors were able to extubate her; however, she continued to have more respiratory distress. She was not doing well. They placed her on Bi-pap but she did not tolerate this. She was in the hospital, agitated, dyspneic, and did not want to be re-intubated.

So now what? Our family had to begin those difficult discussions. Do we continue to push aggressive care? Momma told the family she was tired and ready to die. It was hard for our family to acknowledge what this meant even knowing her wishes. Added to that, it was two weeks before Christmas and my family lived six hours away from Momma. We decided my wife and our three-year-old daughter would travel to Georgia while I stayed home to work. I wanted my wife to be there for the conversation in person and to see her grandmother, as I knew this might be her final days on earth. After discussing options, the family agreed to inpatient hospice care.

I was too involved with work and like many times before chose work over family. My wife was at Momma’s bedside for less than 24 hours when she called me telling me that Momma was asking for me, “The Doctor.” I pulled myself away from work in the middle of the day and headed to Georgia.

I was now being asked medical questions as well as “what about Christmas?”, “what do we tell the great-grandchildren?”, and “is this the right thing to do?” I did not have answers. I had memories and emotions for this woman I loved; I did not want to think, “Momma is dying.”

All the signs were there; it was her time to die. The family began the journey with Momma. I have worked in three different inpatient hospice facilities. It’s easier for me to study the staff, their workflow, their EMR, their census, their medical director – this is what I know. My wife reminded me that this time, I was there for Momma and our family. I was not “The Doctor” now; I was family.

Staff managed Momma’s symptoms quickly and she had two good days talking and interacting. We had made the right choice, albeit not an easy one. Long days and nights at the hospice home wear a family down. Hospice staff participate in these experiences daily. We think how hard it must be for the patients and families. When you are on the other side, you feel the sorrow and you learn a lot about the value of hospice care.

Momma died peacefully four days later. We returned home to North Carolina, only to receive a phone call that “Granny” was in the hospital. Granny was my wife’s 78-year-old maternal grandmother. She had Alzheimer’s disease, had fallen at home, and had developed altered mental status. She was not eating, she had a UTI, and a CT scan showed a small hemorrhage in the frontal lobe. Granny was agitated, not eating, and declining. So now what?

Just three weeks earlier we had lost Momma. Now our family was deciding on inpatient hospice for Granny.
My wife, daughter, and I packed the car and headed for Florida. I took the time from work, but I was still on call and was on the phone, giving orders the entire trip. Once again, it was easier for me to do my work as a hospice physician than confront what I had no control over. We were losing both our grandmothers within three weeks.

As we arrived in the middle of the night, we received a call letting us know Granny died. She had declined quickly. That was truly a blessing. After all the heartbreak and tears, we went to Granny’s house and celebrated her life. This is what she would have wanted.

Those two experiences remind me how hard end-of-life conversations are for families. We as palliative care providers need to remember it is different when there are memories and emotions involved. No matter how informed our families are, these decisions are not easy. And, it’s hard being on the other side. We are no longer medical professionals, we are family. All our medical training leaves our mind and we become an emotional basket case. We find it hard to think straight or make rational decisions. It’s difficult living with the decisions and through those choices.

I’m 40 years old, my parents are approaching retirement, and my grandparents are dying. I have friends who are struggling with acute and chronic illnesses. All of this has made me a better hospice and palliative care physician and I’m glad I can reflect on my training and life experiences to help my patients and families. I make the conversations personal and emotional. I have more empathy during family meetings. I think this adds a new dimension to the work I do, the work I’m proud to do.

These two experiences brought our family closer together and I’m grateful I could help in the decision-making process. My family saw firsthand how our jobs as hospice and palliative care providers are intensely emotional. We all need to realize the impact we have on the families we care for, how a well-trained hospice and palliative care staff can have an impact on a family.

During our trip home from Florida, my wife looked at me and asked, “How do you do this day after day? I am proud of you and now understand your job even more and how rewarding it must be.”

———–

Christopher M. Thompson, MD, HMDC, assisted in developing the palliative medicine programs at two hospitals prior to joining Transitions LifeCare as Medical Director for Transitions Kids, Transitions LifeCare’s pediatric hospice program. Dr. Thompson is board certified in Family Medicine. After completing his Fellowship, Dr. Thompson became board certified in Hospice and Palliative Medicine with the added qualification of Hospice Medical Director Certification.
 

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