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MANY OF US SAY THAT, if we have to die, we’d like to die comfortably in our home. Luckily, hospice—a Medicare-covered model of gentle, holistic end-of-life care—is ready to help with that goal.
Maybe.
At age 78, my divorced father was diagnosed with Stage 4 colon cancer. He later admitted that he’d skipped getting any colonoscopies. He was a savvy health-care researcher and, via drug trials, controlled the spread of his cancer for four long years. Then came the day his doctor said, “There are no more treatments left, Larry. Call your kids and sign up for hospice. Today.”
If you’re hazy about what hospice is, as my family was, check out Medicare’s hospice page that details the conditions that qualify you for hospice care and what costs Medicare will cover. You might also check out a 2023 New York Times article that sheds light on how hospice functions today. The industry has traveled far from its grassroots, volunteer origins of 40 years ago.
For my father, the shift from living pretty well with cancer to being told he had “about a week to live” was head-spinning, although it shouldn’t have been. My dad’s fallacy—and that of his four kids—had been thinking he could delay death forever. While I’d convinced him to fill out his advance directives before he had undergone a surgery a few years previously, he had engaged in little other planning or discussions.
By the time I was flying from New York to Michigan to “help out,” my busy brother David had made the executive decision to move my father from his cluttered condo to David’s larger family home across town. My brother’s wife, nine-year-old daughter and three large dogs were no doubt a bit flummoxed when David deposited my hospice-unready father into the ground-floor master bedroom. But my father and everyone else were united in wanting the proverbial “good death” in the comfort of a home, even if it wasn’t his.
What happened during that home hospice experience surprised me. After it was over, I compared notes with friends. It seems that what my family went through might not be typical. Still, it could be a portent of what’s to come as the baby boomer bulge meets the realities of understaffed hospice care. Here are five takeaways if you’re ever considering home hospice for a loved one—or yourself.
1. Research hospice options before you need them.
As my father and family found out, the very end is much too late to think about hospice—both for taking advantage of hospice’s full psychosocial benefits and for finding out what you’re getting into.
The hospice provider, which had been suggested to my father by his doctor’s office, turned out to be severely overstretched. We had only four short visits from a hospice nurse—a different person each time—during the 11 fraught days of my father’s end-of-life passage. It was also impossible to get the hospice doctor on the phone to answer our ongoing questions. Even so, we could never find the time to research and switch to another organization.
Since events can overtake you at the end of life, spend an hour today learning which hospice providers operate in your area. AARP keeps an excellent updated page with facts about hospice, including questions to ask when you interview organizations. Your future self will thank you.
2. Know what equipment and services to ask for.
Beyond the electric hospital bed, rolling bedside table and plastic commode that the hospice group delivered, my brother’s home was not equipped for a dying person. Side note: At the intake meeting where we met with hospice nurse No. 1 and a social worker, we all agreed that the bed was much too short for my six-foot, four-inch father. He requested a replacement, but one never arrived. We should have kept asking.
We quickly found ourselves making daily runs to a nearby Target for more towels, more large and small pillows for propping up, more pajamas, cooling patches, ice packs, a small table fan that my father could angle, sheets, blankets, sippy cups and dry-mouth swabs, plus an intercom because my father’s voice weakened too much to call for us in another room. My credit card got a workout.
3. Be prepared to hire help.
As much as we tried to make my father comfortable, it seemed impossible. He was plagued by restlessness and couldn’t sleep or be convinced to stay in bed. Someone had to be near him around the clock to prevent a fall in his weakened state.
After six sleepless nights, we called the hospice phone line yet again with questions about the situation, and a nurse on the line finally filled us in on “terminal agitation,” a not-uncommon occurrence at end of life for cancer patients, even though no one in our family had heard of it. She told us that this kind of metabolic restlessness was worse than pain because it could not be soothed by painkillers. “Call us again if you need to,” she wrapped up.
By then, we realized that our home hospice team was mostly voices on the phone, not the onsite caretakers we’d expected. A concerned long-distance relative emailed me: “Get yourself some nighttime help so you can sleep.”
I had no idea how to find good health aides at short notice, but it turned out that “good” wasn’t the issue. We just needed someone to sit near my sleepless father, so we caretakers could get some rest. I also needed time to coordinate events outside of hospice, such as lining up a funeral home to call when my father died. In the end, I pretty much handed over my credit card to three different aide services to help us patch together 24/7 coverage until the end.
Will you need expensive additional aides for home hospice? Maybe, so be prepared by getting the names of aide services and interviewing them at the beginning of the hospice process, so they’re just a phone call away if needed.
4. Confusion may reign unless someone is in charge.
Continuity of care was a big problem for us and my father. There was a revolving stream of new hospice personnel and eight different aides, along with a churn of visits from nearby relatives and phone calls from folks farther afield. Meanwhile, every day brought changes and challenges as the end of life approached.
It took me far too long to realize that neither my father nor the home hospice team were running the show; I was. In unfortunate timing, during these hospice days, my brother had been pulled away to manage an ongoing crisis at his company. Still, every night, David remained on call to help me or an aide. He was the only one who could support my tall father as he restlessly moved from bed to nearby chair to commode.
Needless to say, my brother was exhausted. After another of these nights, I emailed my two sisters what came to be known as “the bossy note,” telling them exactly what was needed from them beyond the occasional visits bearing baked goods. It was all-hands-on-deck time.
I suggest that, upon hospice enrollment or before, everyone should agree on a point person. This coordinator would have the overview of the home hospice situation, be given the latitude to set the ground rules and make decisions, and be allowed to delegate whatever to whomever, as needed.
5. Doing hospice at home may mean a non-professional will be in charge of the medicating.
One of the hallmarks of hospice is the comfort care provided. On the first day, as I followed the intake hospice nurse on her way out the door with my list of anxious questions, she stopped me by handing over what she called a “comfort box.”
I pried open the white cardboard box and saw a confusing array of vials, syringes and suppositories. I thrust the box back towards her. “This is all for you to use, right?”
“No, they’re for you,” she said. “If your father needs them, you can call us. Put the box in the refrigerator where you can find it fast.” Then she left.
I immediately regretted that I didn’t ask her to go over each and every medication and how to use it, recording her explanation using my cellphone.
Later on, when I hired the aide services to help us through the final days and nights, I found out the aides weren’t allowed by their companies to prepare the needed anti-anxiety and sedative medications, and they could only give them to the patient when directed by someone in charge, meaning me. If I wasn’t awake to direct them, my father wouldn’t get his comfort meds.
As my shaking hands prepared morphine syringes and crushed Ativan pills in the middle of the night, I thought, “I would never expect or want someone like me to do this for me.”
My advice: When you’re doing those early interviews with prospective home hospice providers, ask who will actually dispense the medications. Maybe you’ll find out the home hospice nurses will be there to do it. But in our case, they weren’t.
My father died on Oct. 25, 2015, after his 11 days of home hospice care.
Was it the good death my dad had hoped for? I’ve never shared this with my siblings, but I don’t entirely think it was. My father had always prided himself on being the problem solver, not the problem maker. While we tried to hide our distress, he couldn’t help but notice how unprepared his kids were to supervise this 24/7 medical undertaking.
One late night, as I lay awake on the king bed beside my restless father in his little hospital bed, he told me he was sorry about “all the trouble I’m causing,” as he put it.
“I didn’t imagine it would go like this,” he said quietly. “No help. No sleep. Not knowing what’s coming next. Thank you for everything you’re doing.”
I reached over and touched his hand. “Dad, I am so grateful to be here helping you through this after all you’ve done for us. Please don’t apologize. You’re no trouble at all.”
Later, I heard friends’ stories of their supported and peaceful experiences in dedicated hospice facilities. There, they could quietly share smiles and good memories, listen to music, even be served meals. A facility can perhaps more easily arrange quality-of-life options for the patient, such as expert bathing and therapeutic massages with oils. Most important, a facility would presumably be staffed with professionals who could administer the proper palliative medication. A place that’s designed and intended for end-of-life care clearly has some advantages.
If, however, you’re with the majority who would prefer using hospice in a familiar home setting, look into what’s entailed well ahead of time. Ensure that family or friends are willing and able to coordinate all the activities and decisions. Have a credit card ready for all the purchases and extra help you may need. And don’t make hopeful assumptions, as I did. Be proactive and ask the necessary questions, so you or your loved one gets the quality end-of-life care all of us deserve.
Laura E. Kelly is a web designer and book editor living in Mount Kisco, New York, with her husband, author Warren Berger. As Laura contemplates retirement and relocating, all of those things could change (well, probably not the husband).
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Thank you for sharing this. This is has been my experience. It will be one month today that my father passed away. He was home and was steadily declining over the years from dementia. He had a home health lady that was heaven sent which allowed me to at least have a life most days. Months before I meet with our local hospice agency to navigate the current status of agencies in my area and they were wonderful. He was hospice eligible at home but I opted not to because he would loose our care giver that he was so comfortable with due to insurance complexities. In his final hours, I transferred him to an inpatient hospice through our local ER for IV morphine. Throughout the process I have meet that most beautiful people who themselves are care givers and we leveraged on each other’s experiences on how to navigate this area. What I learnt is that it was important to select a local hospice agency that has both an outpatient and inpatient facility and trust me they are a dime a dozen. What saved my mental and emotional health when he passed was that we had prearranged his funeral arrangements years in advance. I will truly miss him.
You were really on top of things, Sapna, and had some wonderful help, too. You and your father were lucky to have each other, and I’m very sorry for your loss.
i was the caregiver for my wife with Alzheimer’s for 3 years, the last year on hospice. I’m a retired on-gyn luckily since hospice was useless. It is a money making operation charging $7,000 per month, Medicare pays $5,000, for a brief weekly nurses visit. My experience was exactly as described In the article.
Our experiences are important to share so that people know and plan accordingly, to the best of our abilities.
Thank you for this and especially the reference to “terminal agitation” which no one ever explained to me.
I had the experience of both home and facility hospice care for my father and mother respectively. My experience with my father mirrors yours and reading this brought back the memories of 8 years ago. Being ill prepared for what occurred brought anger and frustration with the services at a time where compassion for my father was most important.
So, when my mother reached that stage I was convinced that facility hospice care was better. My mother didn’t experience the agitation, but I can’t say the frustration was a whole lot less. It comes down to quality of help, empathy for the patient and caregiver, consistency of actions and explanations in both scenarios. Caregiving to a loved one who is passing is something you’re not prepared for.
I’m glad my story was helpful, Joseph, especially about the little-discussed “terminal agitation,” but I’m sorry your experience with your father mirrored my own.
As a medical intern, I watched for weeks as four generations in the family struggled but failed to understand that their patriarch, sedated and intubated in the ICU with terminal cancer, was already dead long before we shut off all the life sustaining measures. In your case, I would say any advanced preparation is one step closer toward a good and dignified death. Such efforts also bring closure to the rest of the family sooner rather than later. Well done and thank your for sharing your experience. I shall share your article with my patients who would benefit from end of life planning.
I agree that the family needs to understand that nursing their loved one back to health is NOT the goal at the end nor even possible. You are helping your loved one to as good an end as possible AND enabling understanding and closure for yourself about what is happening. Life planning before and open communication during hospice is essential.
After fighting for more than a month in the hospital, my father told me he wanted to die. We talked about a few days earlier, but this time, I agreed. Thankfully a kind nurse told me that the combination of morphine and Ativan is like 1+1 = 3. Press the pump button every 10 minutes and 6 hours later he passed. I am forever thankful to that nurse.
Interesting info about a peaceful hospital ending. My father wasn’t in great pain and kept waving off medications. He said, “I want to be here for you kids. And I don’t want to get addicted.” Considering the circumstances, we all laughed a little at that worry, even him. But finally he agreed to “a little morphine” because he said, “I desperately need to sleep.” I’ve always wondered if that “little morphine” I had to give him under the tongue (no easy pump buttons) hastened his death, since he passed away a day or two later. Just one of many questions that don’t matter in the end.
This article couldn’t have been more timely. These decisions are unfortunately imminent for my family. I hope we’re ready.
You are already more ready than my family was just by reading this article and its comments and following the links. I wish your family the best comfort and care that hospice (or aides) can provide.
Thank you for sharing your experience. It brought back some memories, for sure. My experience went even worse than yours, if you can believe it.
My parent suffered a stressful ending that easily could have been prevented had they been assigned caring, competent staff. We had one amazing LPN. But the head RN and doctor should have had their licenses taken away. I now advise others to avoid large national brand for-profit hospices.
After I wrote up this article, I looked up whether the hospice we used was nonprofit or for-profit. I would have bet the latter. But its website says “nonprofit.”
Side note: Towards the end of the ordeal, when my patience had run out and I vented about all the dropped balls and bad communication to a voice on the hospice phone line, the voice kept urging me to “fill out the review form” as my best recourse. When weeks later I fumed to my sister that I’d never gotten a feedback form from the hospice org, she told me, “Oh, I got that in the mail, but I just threw it away since those never matter.” I was not happy to hear that; that hospice org would have gotten a doozy of a feedback form from me. And who knows, maybe some improvement might have happened for future patients and families(?)
By the time a loved one in hospice passes and families are sent that survey, I’m betting the vast majority are so physically and emotionally exhausted by that point by months or years of battles, stress and anger at the system- both hospital and hospice related – on top of their grief – that they just want to move on and forget it all.
My partner’s family experienced major issues and they vowed to fill out the survey feedback- but fast fwd weeks later and they just didn’t have the motivation/energy to follow through with it.
I didn’t want to either, but I was so angry that they robbed my parent of a peaceful passing that I pushed myself to fill out the darn thing – and sent a blazing copy to both the local office and corporate HQ. I went into great detail on the two offending “professionals” – I received letters apologizing profusely and assuring me the people would be counseled/retrained. Who knows if anything changed, but they certainly got an earful from me.
I heard back later from one staffer I ran into who thanked me for sending it and admitted those two employees who created so much stress for my parent had angered other families too. She urged them all to fill out feedback forms, as leadership won’t always listen to fellow staffers’ feedback, but when it comes from families, it’s taken more seriously. Unfortunately families rarely follow thru and the bad seeds continue on because of that. So I at least felt a tiny bit better.
It’s not too late to provide feedback – just ask for another form or look up the execs at main office and send them an email detailing your experiences.
Thanks, CJ. I admire that you found the wherewithal to give the hospice org good feedback in a timely way. That said, I agree it’s never too late to provide feedback. I don’t have the names of workers from that place because we never met anybody more than once, but I certainly still have my notes.
Thank you for sharing your experience with the decisions and resulting actions that were taken at the end of your father’s life. I hope reading your article will encourage all of us to better use our remaining time.
I do wish my terminally ill father had gotten the ball rolling earlier on the end-of-life conversations we all needed to have (for instance, his wish to avail himself of medical aid in dying, which I mentioned in a below comment). Dying can be tough, but maybe his remaining time might have gone a little better for him (and his kids).
Thank you for this article.
I’ve been procrastinating on contacting a professional planner to have the right information at my fingertips and services in place for an elderly relative.
This article gave me a kick in the pants to fire off an email to a highly recommended consultant to get the ball rolling.
You’re lucky to have a good consultant to help you plan. I hope you meet with him or her as soon as possible for peace of mind.
I was called a “Murderer” for accepting the doctor’s advice for hospice(in my home). I had brought my Dad to the US six years earlier as his PSP worsened. The care afforded was very limited because he did not have insurance coverage. Just few hours a week of compassionate care by Princeton Hospital in NJ. Dad lay in a hospital bed I had bought from a local charity and then gifted back to them. I made sure to turn Dad to avoid bed sores. I kept him cheerful at all times by tuning to a Sindhi TV station from Sindh, the land of his birth, I surrounded him with flowers, family photos and kept his bed near the picture window. In the final weeks, I slept on the carpet beside his bed because his voice was too weak to be heard. He died in my arms. I think he did hear me calling out to him “Darling Dad”.
There are so many misconceptions about what hospice does: quite a few people think they intentionally kill patients or that you don’t call hospice until you’re literally on your deathbed. Most families wait too long – the biggest benefit from hospice is earlier on.
Caring, well-staffed hospice teams are a godsend to those passing and to their families. There are many wonderful hospice people – true angels.
Thanks I agree. The hospice persons who came were truly wonderful. I will never forget the kindnesses shown us by Princeton Hospital, the West Windsor police and First Aid Squad. The Squad remembered my regular contributions to their fund and ferried my Dad via ambulance at no cost, My husband had built a strong ramp to bring Dad into the house from the garage. I gave the ramp to the First Aid Squad which said it was the best one they had seen.
Your father was so lucky to have you by his side at the end. You couldn’t have done any more for him.
Thank you Laura. When he went I was at peace knowing I had kept him cheerful and happy. He wanted his ashes to be immersed in the River Ganges, in India, although he had never entered a temple in his life. I fulfilled that wish too.
Thank you for an amazingly honest and emotional article. Both my parents died peacefully in their assisted living (skilled nursing) rooms. This was the best last gift to their children. We were able to visit as long as we could without having to worry about their care. I intend to do the same for my girls. My wife is a great nurse, but on my death bed I want her to be my wife, not my nurse.
I read your last line out loud to my husband… just in case he thought he was getting skilled nursing as part of my wifely skills (which he already knows is not the case)!
My wife and I had a similar experience. My best advice for dying is to have a lot of daughters–ideally who are nurses.
I’m so sorry to hear you went through a similar experience. Since planning doesn’t always work, everybody should listen to Ben’s advice (-:
Laura,
Thank you for this terrific and important article and for sharing so much of what you, your dad, and your family experienced. It was eye opening to say the least.
My mother died at home, and we were lucky that her in home hospice care was excellent. That’s another reason your article is so valuable—I had naively assumed that this was normal for in home hospice.
My father, who died at 98, always had strong opinions as well as great faith in competent professionals. That was no different during his last days, when he was in a large and excellent hospital in Dallas.
One day, after an uptick in his condition, my sister said to him, “Daddy, good news! If you keep improving like this, the doctor says you can go home!” “Home?”, he said. “I don’t want to go home.” I want to be in the hospital, where there are doctors and nurses and people who know what they’re doing!”. Thankfully, he got his wish.
Interestingly, about a decade before my father’s passing, my husband’s 88-year-old mother used hospice at home for more than a year and had a very quiet, gentle death (or so it seemed to me from afar). The hospice social worker even became a friend of my husband’s elderly parents and attended my mother-in-law’s funeral. So I only had good associations with “home hospice.”
In my article, I outlined a few reasons my family might have had a particularly bad experience, but I have been interested to see a few other commenters report similar experiences. An article like mine is designed with “forewarned is forearmed’ in mind.
Thank you for this hard-to-read reality check. Both my father and my mother chose to die at home, with a nurse and five children nearby. We were blessed by having few of the issues mentioned in this article. I think my expectations have been far too naive as a result. This article woke me up to what we should expect if we aren’t prepared, and to some degree what we should expect even if we are. Don’t let this article automatically deter you from considering death at home as an option. Just be ruthlessly real about the sacrifices you may have to make for someone you love and who loved you.
Agree with your last two lines, Martin. And since our generation is next up in line, we need to be realistic about our own plans and expectations, and not dodge the issue.
Your experience parallels ours when our mom passed away from cancer 3 years ago just before Covid. We arranged for hospice and met with the nurse who was the coordinator. But the actual care was provided by us although they said they’d send a nurse when she was actually dying. A hospital bed was delivered. Caring for, washing, and so on was an around-the-clock job that was up to us although mostly she was sleeping. Someone came by to check every 2nd day or so. Then one morning less than a week later she couldn’t be awakened and they said they’d send a nurse. We had no idea what to do to help or care for a person that was dying, all we could do was give squirts of morphine which she swallowed. She passed away before the nurse arrived that afternoon. It was a terrible experience for those present since we weren’t trained medical people.
Yes, Mark, that sounds all too familiar. As others have expressed their sympathy to me in these comments, I certainly express my sympathy to you. I hope our experience is not common, but as I wrote in the article, I wonder how it’s going to work as hospice services get stretched by the huge boomer cohort.
This is a beautifully written article about a topic most of us prefer not to think about, until we or a loved one develops a terminal illness and must confront it abruptly. In recent years, a family member of mine opted to receive in- home hospice care while another chose to move into a facility. I could see pros and cons to each, but if the patient is able to express a preference, ideally that will guide the family in deciding. I saw first hand how much the survivors benefitted from seeing their loved one being cared for compassionately at the end of their life.
if only the in-patient hospice facilities were a little less grim; a little warmer/more welcoming, more patients would opt for that, I think, vs burden their families with full 24/7 care. But the ones by me are simply one floor within an existing hospital. They had the same cold clinical, impersonal feel. It would be depressing to spend one’s last days there, I think.
Definitely, it’s best if the patient can direct what they want, but hopefully after discussion with all involved. I’ve often wondered why my father’s doctor never initiated such a discussion. He, more than anybody, understood what the reality was. Not his job, I guess.
My mother was in an assisted living facility for dementia when she entered hospice which she continued to pay for until she passed. I was astonished at the large amounts billed to and paid for by Medicare for the limited hospice services she required. We never looked into a hospice facility. The fact that this was mid-pandemic didn’t help. One benefit of hospice is that they averted ER trips. I am glad that you shared your experience.
yes! That put an end to the 3am wakeup calls every week, sometimes 2x a week by assisted living/nursing homes, informing me they’ve sent my parent to ER for the most ridiculously minor things that weren’t threatening their health at all. Just ship ’em out! So disruptive and frightening every time for a dementia patient. So many needless panicked trips for me rushing over, then waiting around 10-12 hrs overnight in ERs, while trying to hold down daytime job. Feel like I aged 20 years in just 3.
Thank you, Jack. I agree that a huge benefit of hospice is that all are agreed “no ‘life-saving’ trips to the ER.”
Thanks for sharing your experience with us. I would like to discuss about different options that we all have when the end of our lives is near.
I strongly believe in having the option to decide, when I have reached the bottom of my quality of life, how to end my suffering and avoid the tragedy of lingering in what for everyone is a terrible end.
I believe that having the option to end my life, again when the quality of my existence is unbearable, gives me a sense of peace, control and calmness.
There is a website. COMPASSION AND CHOICES, that creates an opportunity to learn about this challenging , complicated , and confusing events.
Thanks again for giving me this opportunity.
Mario Finkelstein
I couldn’t agree more. (I recently wrote an article on steps to take.) Unfortunately, even the few states that have “Right to Die” laws have restrictions that make them unusable for many people. I hope to make a one-way trip to Switzerland for certain diagnoses, but that requires a fair amount of planning.
me too.
Mario, in my short article, I didn’t touch on the first thing my father said when I arrived from New York: “Get me to Vermont.” He wanted to choose the timing and manner of his death by accessing medical aid in dying in that state (the closest to Michigan in 2015 where it was legal). I Googled Vermont’s eligibility rules at the time, and he would have needed six months residency there. When I reported back “It’s too late, Dad,” I’ll never forget the distressed and scared look that crossed his face. He was not looking forward to what was ahead.
Thanks for sharing your experience. HD is a great site with lots of useful articles, but for me this is one of the most impactful and useful I’ve read. While I understand that much might depend on the various service providers, nevertheless your article increased my awareness of the need to carefully and thoughtfully plan for the very end. Thanks.
My main goal in writing this was to raise awareness, so thank you for your note.
I’m very grateful that you would bare your emotions to provide this guidance. My hope is that my family will have information like this to make rational and helpful end-of-life decisions when the time comes. I also hope that “my time” is a long ways off – – – but you never know until you get there.
Right after this home hospice experience, I wrote up much longer notes about the whole thing which I have shared with a few friends when their parents were facing end of life. But I think this shorter article gets across—for both the dying person and their friends and family—that preparation, not denial, will serve you well.
As I continue to read articles about former president Jimmy Carter and his experiences with hospice, this article sheds light on an entirely different angle of hospice care. Thank you so much for the article, Laura. It will be immensely helpful to more people than you could ever know.
The stories about Jimmy Carter, and those about Barbara Bush before him, are great advertisements for the possibilities and benefits of home hospice.
Imagine if all cancer patients could get the level of personalized care Carter got.
The typical cancer center looks at infusions as profit centers, not patient care. I’ll leave itbat that for now.
michael: I feel everything in healthcare now is a cold, calculating profit center. It’s not healthcare – it’s sick care – and how much they can bill is all that matters.
I have been reading this site ever since it began, and this is the first time I’ve ever commented–thank you so much for writing this article. You are a wonderful daughter.
hey – two CJs lol. I’ll have to change my user name 🙂
Thanks so much, CJ. Now I have to get out the tissues!
I’m sorry for the loss of your father, and for the very difficult situation in which you found yourself. Thank you for sharing, this is still more validation for my decision to move to a CCRC, where my home will include both Assisted Living and Skilled Nursing facilities, along with Independent Living. I will still support my local hospice, however.
It’s good to support your local hospice orgs. Who knows–maybe they will be by your side even at the CCRC.
SNF or hospice isn’t an either/or decision. A lot of people don’t fully understand that “hospice” does not imply a place. It only designates a life stage and care approach that acknowledges the patient is expected to live less than 6 months and therefore the goal becomes not treatment, but making the end of life as comfortable as possible.
In the US most people are unfamiliar with what hospice actually is and how it works. As a result, patients in the US receive an average of 19-20 days of palliative care days, 10 fewer days than non-US patients, while spending twice as many days in an ICU.
After spending a year as a hospice volunteer at one of the longest running hospice organizations in the country here are a few things I learned about hospice care that I didn’t know prior to volunteering:
My immediate and in-law families chose two different hospices – neither had any volunteers – that would have been wonderful! They only had paid LPNs and CNAs – with very limited # of visits allowed.
I had to work and had no one else to help, so had to leave my parent alone a lot unfortunately. That’s great that some hospices have this!
That’s such great info gleaned from your volunteering. Thanks for sharing it. I hope there are lots of other hospice volunteers like you.
Thanks so much, Laura, for a helpful and informative article. My family has a history of extremely long-lived women who insist on remaining in their own homes until death. Two were able to hire around-the-clock caregivers for their last several years and died peacefully. Others relied upon live-in family members who gave up jobs to care for their mothers. Though I admire the commitment of those family members, I’ve decided to move to an ongoing care facility, like my mother-in-law did when she could no longer live independently. Your dad’s situation was quite different and it sounds like all of you, but especially you and your brother, did a great job with little preparation.
I’m not sure where I’ll land for my third act, but looking for good facilities and hospice providers in the region will be part of my research. Of course, who knows what will be happening decades from now?
Very helpful, Laura. The average people learns from their mistakes so they can avoid making them again. Others don’t learn from their mistakes and continue to repeat them over and over. The wise person, however, learns from the mistakes of others and avoids the mistake entirely. Thanks for giving readers of this column the opportunity to be wise.
I’m glad readers are learning from the article, Dan. Humble Dollar specializes in that!
When my father, who served in the Navy for 4 years during WWII and was receiving VA benefits, needed home hospice care none of us thought of the VA as an option. Fortunately, he only needed a few days of care beyond what my sisters could provide and passed on his terms, in his sleep, at home. Here is what the VA’s website says about hospice care:
“Hospice Care is comfort care provided to Veterans and their families if the Veteran has a terminal condition, with less than 6 months to live, and is no longer seeking treatment other than palliative care. Hospice Care can be provided at home, in an outpatient clinic or in an inpatient setting.”
Something to consider if your loved one is a veteran. Great article Laura.
Thank you, Patrick. So glad your father’s death was peaceful, aided by the VA’s excellent hospice care program.
Laura, thanks for your honest and moving story. My wife and I have been through home hospice with our 4 parents, and had good experiences with all. Your story brought back many sad, and happy, memories. After reading your story I better understand how fortunate our family is. My wife is an incredibly caring, compassionate, and experienced nurse. Her mother was the same. My mother worked in health care and had many dear friends with nursing experience. When the time came my wife took charge, and our families embraced the “all hands on deck” need. I’m confident we were able to give our parents a dignified, peaceful death at home with loved ones. But It was hard, and we had resources the average family doesn’t have. It sounds like you did a great job in a very difficult situation, and i have no doubt your father felt the love and caring you showed. It’s easy to question ourselves after the fact, but you clearly jumped in and did the best you could in a challenging situation. You may regret specific decisions or actions, but you will never regret being there for your dad.
Your story rightly urges us to prepare for ours and our family’s final days. There are many ways to do this. One way to do this is to find a way to help others who are in similar situations. Many of us have family or friends who have aging parents, sick spouses or children. They likely could use some respite. Offering an hour or two occasionally helps us learn about caring for others, and makes us more knowledgable and comfortable with difficult situations. And, in my experience, those good deeds will come back to tenfold.
Thanks so much for your kind reply, Rick. Now that I think about it, many of my friends who had good experiences with home hospice had medical people in their friends and family circle. I have to admit I’m a bit envious of them (and you). Give your wife a well-deserved hug–it’s not easy what she has provided.
Very helpful—thanks for writing it, and condolences on the loss of your father.
Thank you for the condolences. I’m learning that even 8 years later, it means a lot to hear them.
My mother also died of stage 4 colon cancer for the same reason. We were fortunate that my parents had chosen a continuing care facility where they enjoyed their independence and then moved to assisted living, and finally, she was taken care of in their nursing facility. So often, I have felt guilty that I did not take care of her at home. Thank you for helping me realize that her outstanding care was much better than what I could have done.
Thanks for your note. I’m glad what I wrote makes a positive difference in how you think about your mother’s last days.
My sincere condolences and thank you for your transparency and willingness to share your story. I hope you and your siblings have found peace since his passing. We too will bookmark this story and share it with family. We are on the cusp of having to arrange home care and plan for future accommodations for my parents, who are in their late 80s. Although your situation was challenging, your father’s awareness and gratitude near the end was powerful and moving.
Thanks, Thomas. My father was alert and “himself” up until the very end, which made the dying-at-home experience both easier and harder. He got all we could give, but I couldn’t help thinking he deserved better.
Our family has been through this with both sets of parents, and my sister-in-law. We got very lucky because the service for our in-home hospice service was truly outstanding, and they were sensitive to the familys needs and answered all questions.
Most of my friends have shared with me that their in-home hospice experiences were very good, thankfully. Unfortunately, the overstretched hospice team we hired just couldn’t be there for us enough. That, and the ongoing “terminal agitation” my father experienced, changed the game, I think.
I have bookmarked this page for future discussions with my family. As ideas and plans and needs change.
You and your family showed fortitude and courage and there’s nothing more that a parent could ask.
Thanks, Catherine. Home hospice was a “new” experience for our family, to put it mildly, and we did try our best. Calm pre-discussions about what we would all do as the end neared for my father were sadly lacking.
Thank you for sharing your story. We all seem to assume it would be better to be at home, but I also have seen that is not always the case.
By reading my story, you’re already one step ahead of my family in thinking about what “dying at home” could mean. Whether you choose good hospice support at home or in a specialized ward or facility, it certainly seems better than being attached to ultimately futile machines in a hospital.
I don’t know why anyone would choose home hospice care instead of a facility. I went through it with my mom and the facility was great.
you’d probably change your mind if you saw the hospice facilities I’ve seen. They weren’t dirty or dangerous – but it was exactly like being in a busy, impersonal hospital.
Thanks for sharing your experience with a facility, Nick. Looking back, maybe it would have been better for my father, but my family never even discussed that alternative going in. Of course, we didn’t discuss anything properly, we were just in reaction mode.