Tag Archives: hospice

Guest Article: Challenges and Ideas for Recognizing and Treating Pain, Anxiety and Agitation in Persons with Dementia

It’s an honor to be able to post this article by Brad Macy, who is a veteran hospice nurse and inventor of the Macy Catheter. If you are finding symptom management is a challenge for the loved one with dementia you care for, this article provides valuable information.

As a hospice nurse for 25 years, one of my greatest challenges was getting needed medication into patients to maintain comfort when they lost the ability to swallow. While most patients lose the ability to swallow in the last days of life, persons with dementia often experience challenges taking oral medications earlier in the disease process. In later stages of dementia, the ability to swallow becomes impaired, making oral medication administration challenging and a safety concern. In addition, due to disorientation, persons with dementia can become uncooperative or even paranoid, refusing medication altogether. 

Many medications can be stopped when patients reach a point that they have difficulty taking medications orally. But medications that control anxiety, agitation, pain or other symptoms can be extremely important to continue for quality of life for both the patient and the caregiver who suffers along with the patient. Patients and caregivers deserve to know the importance of recognizing and controlling pain, agitation and anxiety and that there is a solution to give the needed medications even when patients have difficulty taking them orally. 

Pain, Anxiety, and Agitation in Patients with Dementia 

Caregivers reporting potential symptoms of pain are sometimes told by their doctor or nurse that dementia is not painful or that persons with dementia do not experience pain. This is not true. Several studies have indicated that pain is present in at least 50% of persons with dementia. (1-4) Because of cognitive dysfunction, patients may not be able to communicate pain effectively. Caregivers need to recognize non-verbal signs of pain. For instance, if a patient winces or moans when moved it is a sign of pain and should be addressed. Crying or agitation may also be a sign of pain. If patients had a history of chronic issues with pain such as arthritis or migraines prior to dementia, it can be assumed that these issues with pain will still be present with dementia.

During the later stages of dementia, persons may have a heightened sense of pain, known as (hyperalgesia) or even have a pain response to non-painful stimuli (allodynia) where even the slightest touch can be painful. Other patients may have orthopedic injuries and need medications for pain control.  Caregivers are sometimes worried that medicating for pain will cause the patient to become too sleepy or more disoriented. On the contrary, proper medication can help the patient sleep better which leads to better functioning during the daytime. Many times, Tylenol or ibuprofen may be all that is needed, but a low dose of a stronger pain medication should not be ruled out.  If a patient is started on a stronger pain medication, they may be sleepier at first. Give it a few days, as the body adjusts to these effects within 48 to 72 hours.

Anxiety and agitation can be a common problem in dementia and many times patients are on medications over a long period to help with these symptoms.  If these medications are stopped because patients can no longer swallow, a rebound in symptoms is likely. As the disease progresses, a greater number of patients have difficulty taking medication while at the same time anxiety and agitation tend to worsen. Clinicians may shy away from medicating patients at this stage due to concern about using anti-anxiety medications, or concern that the patient may aspirate the medication or become more agitated, refusing the medication. Fortunately, options exist to ease suffering due to pain, anxiety, and agitation.

Challenges with Giving Medications

Caregivers desperate to get medication into the patient may crush medication and add it to food. This can lead to spoiling the food taste, which can negatively affect the joy of eating and interest in food. Mixing medicine with food can sometimes intensify paranoid thinking, and some patients may even believe they are being poisoned.  

When patients have difficulty swallowing, another common practice is to put drops of medication (or a quickly dissolving tablet) under the tongue.  While this works in certain instances with a few highly concentrated medications, it is rarely effective for severe symptoms and can increase the aspiration risk if medication volume is more than a few drops. Aspiration (defined as food, medication, and secretions inadvertently entering the lungs) can be a significant problem for patients with dementia and with difficulty swallowing.  Aspiration can lead to anything from an uncomfortable coughing and gagging episode, to increased agitation, unwillingness to eat or take medications, or even more serious consequences of pneumonia or bacteria in the blood stream, also known as sepsis. 

Macy-Catheter-Device

Hospi Corporation

I want patients and caregivers to know that there is a comfortable, easy and effective solution to giving medication when swallowing is difficult. The challenge of medicating patients who cannot swallow led me to develop the Macy Catheter.  It is now being used in hospices across the country and allows administration of medication discreetly into the rectum without the need for using needles or suppositories. 

Brad’s Story 

BradMacy_Headshot

In his 25 years practicing as a hospice nurse, Brad saw many patients and their caregivers suffer with physical symptoms of pain, agitation and other challenges when they lost the ability to swallow. This challenge of helping patients and caregivers continue providing important medications led him to create a way to easily, comfortably and safely give medication to patients who could no longer swallow. 

One night, Brad had a very agitated patient who was at home and refusing to swallow his medications. The patient’s son was at wits’ end. He had promised his father he could stay at home for his last days and not go to the hospital. While the patient had oral medication for the control of his agitation at the bedside, he was too agitated to take it.  In an effort to get the patient comfortable quickly, Brad placed the medication in a liquified form into the patient’s rectum with a small, flexible, medical tube. Within fifteen minutes Brad and the patient’s son both watched the agitation melt quickly away and the patient became calm and went to sleep. Brad rigged a way to leave the tube and attached the end of the tube to the patient’s leg where the son could squirt in the medicine without ever having to invade his father’s privacy or even move or bother him to repeat the medication doses. The son was thus empowered to keep his father completely comfortable until he died peacefully a week later. He was extremely grateful for being able to offer his father a good death. 

This was Brad’s “ah ha” moment. He started to use the same method for the myriad of different problems he encountered such as pain, infection, nausea, seizures, fever and respiratory distress and even hydration. It worked so well that the hospice he worked at asked him to train the other nurses and adopted the idea into practice. Soon nurses at other agencies began to hear about the idea and asked him to teach them the method. This was his second “ah ha” moment as he realized the great need for the solution he had stumbled upon, and that a simple, safe, easy to use, optimized device to facilitate this method was needed.  Brad co-founded Hospi Corporation and developed the Macy Catheter® which is now an FDA cleared medical device being used in hospice programs across the country. The Macy Catheter® is a small, flexible tube placed about one inch into the rectum. A small soft balloon the size of a quarter is inflated to keep it in place. When a patient has a bowel movement, the catheter is comfortably expelled and can be replaced. It is easy for caregivers to use and completely comfortable for the patient. It provides a way to continue medications at home, without the need for trips to the hospital or emergency room or the need for intravenous medications.  Learn more at www.macycatheter.com.

1. Zwakhalen SM, Koopmans RT, Geels PJ, Berger MP, Hamers JP. The prevalence of pain in nursing home residents with dementia measured using an observational pain scale. Eur J Pain. 2009;13:89–93. 
2. Van ‘t Hof CE, Zwakhalen SM, Hamers JP. Interventions after diagnosing pain in nursing home residents with dementia: the pilot implementation of an observational pain scale (PACSLAC-D) Tijdschr Gerontol Geriatr. 2011;42:67–78. 
3 Patel KV, Guralnik JM, Dansie EJ, Turk DC. Prevalence and impact of pain among older adults in the United States: findings from the 2011 National Health and Aging Trends Study. Pain. 2013;154:2649–57. doi: 10.1016/j.pain.2013.07.029. 
4. Corbett A, Husebo B, Malcangio M, Staniland A, Cohen-Mansfield J, Aarsland D, et al. Assessment and treatment of pain in people with dementia. Nat Rev Neurol. 2012;8:264–74. 

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Challenges of dying at home, revisited

This week, NPR aired Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families, the national version of a story that first appeared last year on Nashville’s NPR affiliate. I was interviewed for this series, and shared my personal challenges in tending to my dying mother at home.

This is such an important conversation for the nation to have and it is a cause near and dear to my heart. As I state in the story, I am not anti-hospice by any means. My father died in a facility and that was a horrible death. But caring for my mother who died at home had its own unique challenges. Both experiences scarred me for life, leaving me with regrets and with a mission to help other families avoid the mistakes my family made.

I encourage everyone to read and/or listen to this series and think about your own situation. Family caregivers need to be clear-eyed about the demands they may face in caring for a loved on at home at the end of life. It can be the most tender of bonding moments, a final act of love and sacrifice for a beloved family member. Knowing the pitfalls and identifying potential gaps in care ahead of time can help you from becoming overwhelmed and burned out.

Finally, for those who did not have a good experience with home hospice care, know that you are not alone and it’s not your fault. Forgive yourself for anything you may be blaming yourself for (I’m still working on this part.) Your loved one would want you to let go and move on, free of guilt.

 

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More Americans are dying at home, but family caregivers still lack support

holding hands

Image courtesy of Pixabay.

The New York Times published an article this week that touched on a subject close to my heart. The article explores the impact of new data published this week in the New England Journal of Medicine that found more Americans are dying at home than in hospitals.

On the face of it, this sounds like good news. In poll after poll, the majority of people say they would prefer to die at home rather than in a hospital or nursing home. The tide now appears to be turning, and perhaps returning to a culture which embraces providing end-of-life care at home.

But the major challenge, which I’m grateful to reporter Gina Kolata for highlighting in her report, is the following: “Many terminally ill patients wind up in the care of family members who may be wholly unprepared for the task.”

This is something I’ve written about extensively, based upon my own family caregiving experience. My personal essay, Why Dying at Home is Not All It’s Cracked Up to Be, ruffled some feathers at the time. But my point wasn’t to be anti-home hospice. I think home hospice can be a wonderful service. The problem is that there are not enough home hospice service providers, especially in rural areas of this country. As the New York Times article discusses, this leaves family caregivers carrying the heavy burden of providing medical care for a dying loved one, while dealing with the financial cost and emotional toll of that experience. Most family caregivers are woefully unprepared.

“We have put a tremendous burden on families in the type of care they have to provide and the type they have to pay for,” said Dr. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York.

With my parents, I experienced the worst of both kinds of deaths. My father died in a skilled nursing facility without any family members with him, and my mother died at home, with myself, the only child, providing her end-of-life care but lacking support from limited home health care services.

The New York Times article also discusses another downside of dying at home: pain management. My mother’s pain was not managed as well as it could’ve been in an institutional setting, and that will haunt me for the rest of my life. No one should have to suffer needlessly at the end of life.

If you want to learn more, I was interviewed recently on the challenges of dying at home by journalist Blake Farmer at WPLN, Nashville Public Radio.

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‘Home is still a hard place to die’

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Truthseeker08/Pixabay

I was interviewed for a series running on Nashville Public Radio called, “The Cost of Dying.” My interview is featured in the segment, “Home is Still a Hard Place to Die.”

I am grateful to Blake Farmer for reporting on the cost and challenges of end-of-life care. It’s a topic that is not discussed enough, until one finds themselves dealing with death in their own family.

Farmer took note of my essay, “Dying at home is not all it’s cracked up to be,” which appeared in my essay collection, The Reluctant Caregiver. That essay sparked a lot of debate on social media, because it revealed that there is another side to the aging-dying at home trend, and it’s not pretty. It’s one that family members often silently suffer through, because they feel guilty if they complain.

As it’s made clear in the Nashville Public Radio report, I am not anti-hospice by any means, and I know there are wonderful people who work in the industry. It is not a job I could imagine doing, and I think it takes a special kind of person to care for the dying and their families on a daily basis. But especially in rural areas, there are simply not enough hospice and home hospice providers available. That means the care falls upon family members, which is what I experienced with my mother. It was one of the most difficult things I’ve ever done, and while I don’t regret caring for my dying mother, I wish I had been better supported.

Farmer’s series places a spotlight on the challenges of dying at home, from interviews with family caregivers to an examination of the growing hospice industry. I encourage you to listen to the series and read the accompanying reports.

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How the dying teach empathy to today’s youths

While some may feel empathy is not something that needs to be taught, but is something that should come naturally to human beings, I do think people need opportunities to experience empathy.

A unique class for high school seniors in New York is doing just that. Simply called “hospice,” the students learn how to take care of the dying and a whole lot more.

hands

I was moved by the students’ experiences, and how they learned to cater to the resident’s needs, both physical and emotional.As anyone knows who has cared for a dying person, it is usually the smallest of actions that mean the most. A student helps a woman who was a speech pathologist but now ironically battles frontal lobe syndrome do a word puzzle. Another student rook time to read a memoir that a resident had written about his life, to get to know him better.

Sometimes the students experience death, up close and personal. It even hits close to home sometimes, as one student enrolled in the class has to deal with her dying grandmother who has been admitted to hospice.

The students shared what they gained from this most unusual of courses. They liked the fact that it was non-competitive, and it was a reality check that we are all going to die someday. Another student liked the class because it wasn’t competitive like most of his other courses; it’s simply about helping other people.

While I say kudos to The Harley School for maintaining such a course, and there may be similar classes elsewhere, I would like to see this become a more widespread movement. We’ve heard about the “scared straight” classes that send troubled teens to the morgue, and while that may shock some into choosing a better path in life, I think being around those who are one step away from death is far more valuable.

 

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My essay about dying at home posted on The Caregiver Space

I’ve been reading posts on The Caregiver Space for quite some time, but never had time to submit my own writing.

Now that I find myself in a post-caregiving phase of my life, I’m really trying to focus on writing a series of essays that have been stewing in my brain for awhile.

hospital bed

Last week, The Caregiver Space published my essay, “Why dying at home is not all it’s cracked up to be” and the reception has been quite positive. The post was published on The Caregiver Space Facebook page where it generated several hundred likes and many heartfelt comments.

The essay is not an attack on hospice care workers; I admire most of them and think they do a phenomenal job. Hospice care is truly a calling in my opinion, and one can see the benefit of the loving, compassionate care they provide.

My essay is a look at dying at home vs. dying in a facility from the family caregiver’s perspective. After my dad died in a skilled nursing facility, I was all for my mother dying at home. But the reality was a bit different. It was an emotionally brutal experience that I wouldn’t wish on my worst enemy. That’s not to say that her death would have necessarily been better in a hospital, it would have been difficult in a different way.

My main point of the essay is to bring awareness to family caregivers in rural areas. They may find that the local home hospice agency is understaffed and overworked, and cannot provide the around-the-clock care that is often touted by die-at-home advocates. People should be aware and prepare themselves for taking on more of the nursing duties of caregiving. If they feel they cannot do it themselves, they should seek out help from family, friends or professional caregivers.

If you have the time, please read the essay and let me know what you think. Also, please share with anyone who you think could benefit from the information.

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Playing the waiting game with Death

My mother’s health took a big turn for the worse this week.

The hospice nurse expects her to pass in days, maybe a week, though her heart is very strong, so she could last longer.

Mother's Day

Mother’s Day

For her sake, and mine, I hope that the suffering is not prolonged.

She is now totally bedridden, somewhat delirious and a new pain complaint has popped up the last two days. She now complains of severe head and neck pain. The nurse cannot figure out what may be causing it. It is unlikely that the colon cancer, if it has returned, spread to her brain, though it is a possibility.

But the morphine is not really touching the head pain, even when dosed hourly. She is so “zonked out” by the pain meds yet still is pointing to her head and grimacing. That is tough to watch.

Mom’s face has been taken over by that ghoulish death mask. Her eyes are starting to look beyond.

But her heart continues to beat hard and strong in her emaciated chest.

In one of her lucid moments, my mother asked what had happened to her. And to that, I had no good answer.

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Being the ‘angry advocate’ is sometimes necessary

I don’t like conflict. I like things to run smoothly and everyone to do their job. This is especially true during a crisis.

Of course, it is in these tough situations that conflicts and issues often arise.

Ironic door sign

I found out yesterday that after waiting over a week for hospice to begin, with my mom reporting an 8 out of 10 on the pain scale during every home health visit, that the hospice transition process had not even started! The home health agency told me I needed to talk to my mother’s primary care physician. But last week, when I was at the doctor’s office, I asked about starting hospice and the doctor’s staff told me the home health agency needed to fax them paperwork.

I was beyond frustrated. I don’t get angry very often but I was really furious. My mom had suffered needlessly for over a week because these two entities that work with each other all the time can’t get their acts together?

Since the local home health agency is now part of a larger corporation, I filed a complaint at the corporate level. I don’t generally like to throw people under the bus but I wanted action.

And it worked. Tomorrow a staff member is coming to transition Mom to home hospice.

I just wish I had been the angry advocate sooner.

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A family’s choice

Today was a fruitless 10 hour hospital vigil waiting for the doctor to discharge Mom back to the nursing home. The doctor finally showed up at 5 p.m., spent about 3 minutes with Mom and gave the green light for discharge. Of course, by then it was too late in the day, so Mom is stuck in the hospital another night.

The woman sharing Mom’s room is very ill. She’s in renal failure and is refusing more treatment, which included dialysis and amputations of her hand and foot. Her family gathered today for the big decision.

There was tension, tears and bubbly giggles from the woman’s many grandkids. The doctor stressed to the family how the woman was capable of making this decision and how it should be honored.

While earlier it seemed things might get ugly, in the end, the family did the right thing. The woman will start home hospice tomorrow.

The family’s painful day made Mom and I think about Dad and the decisions made for his care.

One has to balance love with mercy in these situations. Often, people confuse the two but today, mercy won.

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Life in a box

I found out today that a former co-worker of mine has died. I had no idea he was ill, as I did not keep up with him after he left the company we worked together at. What I do remember of him was his white shock of hair, a warm smile and an easygoing spirit. Apparently some of his friends were having a life legacy box created for him. An organization has members who are woodworkers donate their time to create beautiful wooden boxes, which can be personalized. They can then be filled with mementos, letters, photos, etc. to honor one’s life. These boxes are delivered to those in hospice. The box is passed on to family members once the person passes. I think it is a beautiful concept.

It made me think about how Alzheimer’s, and I’m sure many other diseases, can overshadow one’s legacy. Years of decline, both physically and mentally, can strip away so much of what makes a person unique. What’s left behind is this shell of a person, who often seems numb and distorted from suffering and the medications designed to ease the suffering. But to allow those final images to dominate our memories allows the disease to win.

I thought about what I would put in a box for Dad. Definitely something green, probably a symbol of a shamrock to represent his birthplace. Maybe some rosary beads since he was Catholic. A picture of my parents when they were dating. A picture of Dad holding me as a baby. I would include a photo of the Titanic, because he loved to study the history of that ship. I’d probably put a cigarette in there, because so many of my memories of Dad include him smoking. (My mom still hasn’t thrown away the last pack of cigarettes that Dad had at home.) Can’t put a pint of beer in a box but maybe a Guinness coaster or ad, since that was one of his favorite brands. Maybe a tiny bottle of Old Brut, the cologne he wore the most. I’d throw in a Bing Crosby CD.

It’s kind of funny how my memories of Dad are a distinct mixture of virtue and vice.

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