A New York Times article published today discusses a topic near and dear to my heart: the challenges of dying at home.
I have written about this topic extensively, including in my book, The Reluctant Caregiver. I also published an article, “Why dying at home is not all that it’s cracked up to be,” on The Caregiver Space that generated a passionate discussion. Some people thought I was anti-hospice, and that definitely isn’t the case. I think home hospice care, when it’s available in a well-funded and well-staffed form, is a wonderful concept that can support a good death.
But as Paula Span points out in her NYT article, there are challenges and limitations in real-world home hospice care. One issue that I can personally relate to is pain management. My mother suffered because I could not adequately manage her cancer pain at home with the drugs available to me. There was also the battle with her doctor just to get her enrolled in home hospice, which came much too late to be effective.
Caring for the dying at home can be physically strenuous. I struggled to move my mother in bed to change sheets and prevent bedsores. Before she was bedridden, helping her to and from the bathroom was also a challenge. I was a 40-year-old woman in decent shape. But for elder spouses of the dying who may have health issues of their own, it can be overwhelming and untenable.
Palliative care specialists at Harvard Medical School recently published an article in the New England Journal of Medicine suggesting improvements to hospice care, and I agree with their recommendations. For those determined to die at home, it’s essential to have have sufficient home health care services so that families are not overwhelmed. This includes nursing care and personal aide services but also equipment like medical beds. The authors also suggest alternatives that are underutilized, such as inpatient hospice care. This was a suggestion that was made in my father’s case, but there was no bed available at the time of his hospital discharge, so he was sent to a skilled nursing facility instead. We met with the inpatient hospice representative and I appreciated the personal aspect of the care, wanting to get to know him, asking what kind of music he liked, etc. I so wish he could have died in that setting. It’s what I would want for myself.
Hospice units within hospitals is another alternative. This offers access to end-of-life care such as pain management but rooms can be configured to be more home-like by removing unnecessary monitoring machines and having hospice-trained staff provide palliative care. It can be a good alternative in areas without freestanding inpatient hospice facilities.
It’s important to think about these options for yourself and your loved ones now so that you are better prepared to make the best choice for your situation when the time comes.
I recently had the privilege of writing a blog post for The Conversation Project. My father died 10 years ago and in May, I will be marking seven years since my mother’s death. I’ve had a lot of time to think about end of life issues in the years since their passing and I’ve shared my perspectives here on The Memories Project blog and in my book, The Reluctant Caregiver.
In my post for The Conversation Project, A Good Death Is More about the Journey than the Destination, I discuss my family’s reluctance to talk about death and end of life issues, and how that impacted their end of life journeys, albeit in very different ways. My father’s death impacted how I cared for my mother, when just several months later, she was diagnosed with cancer.
Neither of my parents experienced the kind of death that I would want for myself, and that is why it has become such an important advocacy issue to me. Please talk to your loved ones, discuss your end-of-life wishes and document it all so that you can have some peace of mind when that phase of life is reached. What I wish for everyone is that you can find the time to simply be with your loved ones who are nearing the end of life, and not overly preoccupied with medical care duties. Just like at the beginning of life, it’s important we have those bonding moments at the end of life as well.
What a fantastic exercise in developing empathy and understanding of the challenges facing those going through the end of life phase. I believe this training could also be adapted for those caring for those with dementia to better understand how one might feel like they are losing pieces of their identity to the disease.
From a fellow blogger training to be a hospice volunteer:
Yesterday, in a training for upcoming hospice volunteering, I was asked the following: Who are the 4 most important people in your life? What are your 4 most important possessions? What are your 4 top beliefs and/or aspirations in life? What are your favorite 4 activities to do? What are your 4 greatest comforts? I […]
What would you do if you receiving a notice that the nursing home where your loved one resides is closing in a few days? It’s a nightmare situation and a case is unfolding right now in metro Atlanta.
In the case of Tranquil Gardens Assisted Living and Memory Care, residents and their families were given just three days’ notice that they must vacate the premises due to foreclosure on the property. The facility housed those with dementia and also provided hospice care, and families are outraged that their loved ones in fragile health are being kicked out of their homes and forced to find new accommodations with such little notice. By law, facilities are supposed to provide at least a 30-day notice.
In a statement, the owner cited the pandemic’s financial toll as a reason for the sudden shuttering of the facility. The statement did not explain why there was not an effort to provide a more reasonable notice, citing “a domino effect of things out of our control transpired at the end that led to a very heartbreaking and rapid end to the facility.”
In addition to the residents losing their homes, the employees of the facility are losing their jobs and may not even receive a final paycheck.
This terrible scenario may happen with more frequency in the months to come. A report in The 19th highlighted a recent survey by the American Health Care Association and the National Center for Assisted Living which found that only one-quarter of nursing home operators are confident they can keep their doors open for at least one year. “The cost to fight COVID-19, chronic underfunding of Medicaid and the number of patients dropping to record lows have led to the industry’s near collapse,” The 19th reported.
There are no quick fixes to the industry’s woes. It will require a mix of funding, better pay for care workers to address the workforce shortage and better transparency and accountability. In the meantime, if you have a loved one in a nursing home, you should consider putting together an action plan just in case you have to face a similar situation in which the facility suddenly closes.
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.
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.
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.
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.
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.
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.
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.
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.
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.