Would you share your experience?

Make the experience better, more comfortable, more accessible, less stressful...

Set out principles, a code, guidelines for patient-centred care that help families and the multiple professions to work in partnership and ensure that end of life care allows people to die peacefully, free of pain and fear, and with dignity?

It's been done. Twice that I can think of, just off the top of my head. The first was the original modern hospice movement to be so called, founded by Cicely Saunders, I believe. The second was the Liverpool Care Pathway. Both excellent initiatives with the very best of intentions: except that the one, as you are pointing out now, has too often been hi-jacked and travestied by commercial operations, and the second you can look up online if you enjoy media horror stories.

You cannot be prescriptive about these things: fit one person's model - or five hundred persons', come to that - to another person's reality and you have already lost sight of individuals' uniqueness; and that, to my way of thinking anyway, is the whole problem. You cannot formulate, package and distribute real care.

Of course, that doesn't make it wrong to try. What do you think you yourself might do to care for people at the end of their lives?

I'm very sorry for your loss, and especially sorry that your father and you and your family didn't get the support you needed when you most needed it.

First you also have my condolences on the lost of our beloved father. I hope good memories bring you comfort. Clearly you were a blessing in his life to be a strong advocate for his receiving the best care....but you also are feeling it seems some pain/regret with the system of hospice and end of life care. I am new to this destination myself and keep thinking I should take notes. I have worked for a social service organization helping older adults for 30 years, and am stunned at some of what I have been thus far exposed to by what is supposed to be one of the best hospice programs our town has to offer. We also have two competing medical systems. I have learned much. The hospice program we are using hands out a handbook and expects stressed family members to all read it and absorb/comprehend/be prepared to enact it. You become a victim in the hospice web. I feel like my life has been hijacked. They tell you to do this, do that, and then don't offer any resources. You are at their mercy (or so I feel) because you are so very grateful for the help they provide, knowing how hard if not impossible it would be to do what they do alone. The aides we are blessed to have, are not doing their assigned tasks even as shown on the videos the handbook directs family to to learn. So I am made to feel guilty for not speaking out or up to theier own supervisor. They provide little in the way of supplies. I feel like I am running a laundromat and /or the aides "maid" taking the soiled disposables in a bag to the trash. They make no offer of routine help that might be available. I am exhausted. They have often called before 7:30 or 8 AM after a night of little sleep, to announce when they are anticipated to arrive. They disrupt the household routine, and interfere with any semblance of a work routine I am trying to maintain, but I don't want to rock the boat. I placed trust in their own MD, that I should not have. To that end it put me on the path to locating other MD's that make home visits. They seem to try and con you (the MD in this case) into using a med without full explanations and certainly in our case inadequate justification. It was a real jolt to be given a card with a phone number and the reassurance to call ANYTIME, day or night, weekends or evenings and when you call, a recording comes on to say they're sorry they missed your call. IF you stay on the line you can ultimately leave a message, and you will hopefully get a call back and the person who makes the call will forward the concern to the right person. But they don't automatically tell /remind you it could be up to a half hour till they call back. One day mom wound up before we had really engaged with them, in the ER. Somehow hospice was notified, and a message was passed to me to call the triage nurse one we were home. We got home at 1 AM. In spite of the hour the nurse wanted to come check on mom, was that okay? Well, I was up, so I said okay. She came, checked on mom, and then proceeded to plug in her laptop and sit at our kitchen table until 3 AM "charting". I was beyond exhausted and had not eaten myself. Again I stupidly didn't want to "bite the hand" we were now dependent on, so I didn't say anything. Before 9 am the next morning they were calling about coming out.
I feel like I have lost control. I am grieving the losses my mother has endured, dealing with the issues of my aging father, and having hospice has become an added stressor. Plus there is virtually no regard for the caregiver it seems at times. Today was the first time I said NO when a nurse and social worker wanted to come out. I was having serious computer problems while working remotely and needed to get into my office to have access to one. In the end I did have the nurse come out. And, while I get the philosophy of hospice, I still think more could be done...for instance since mom went into the hospital bed, she's not been outside & I think she should be....

I'm very sorry about your father, may he rest in peace.
As for my own experiences with at home hospice care, I can't speak well of them. I've worked in homecare for many years and have had many hospice cases. I cannot remember a single one where hospice staffing came and helped the situation in any way. Most of the time they made it worse.
I did have one positive experience with hospice care for my father. He was under hospice care in the hospital and they were terrific.
I think one way at home hospice care could improve a patient's and their family's situation is for them to be less intrusive about what the patient's care plan will be. They are often insistent on things like meds when they don't need to be. They often don't acknowledge the fact that the caregivers and family are the people who know the patient and spend the most time every day with them. They know when something changes or when the person is having a good or bad day. Too often when hospice nursing newly arrives they dismiss what these people have to contribute to the care plan. Also, if the patient already has competent private-hire caregivers who have been with them for years, the hospice personnel should not assume that when they arrive in a home that the private caregivers now work for them. They could also improve by being more realistic about what an at-home patient and their family really needs.
They don't need a legion of social workers coming in and out. Or a different nurse every day who comes to take the patient's vital signs.
What I find patients and families need is the option of multiple aide hours offered daily and at different times of the day and night. Not just to provide hands-on care and companionship to the patient but also to give the family some respite time to have a bit of a break themselves from the situation or to get a night's sleep.

I was able to keep my Husband at home and I would not have been able to do what I was able to if it had not been for Hospice, the VA and the caregivers I was able to hire. (through a program with the VA)
The Hospice I chose was a NOT for profit. I had a CNA that came 2 times a week. As he declined it was 2 CNA's and 3 times a week if they had time. A Nurse 1 time a week and medications were ordered through her and delivered. He was on just a few meds. Seraquel, Lactulose and an eye drop, Atropine that I used orally to help prevent secretions from his mouth. If he developed a rash other meds were ordered. As he progressed (declined) I was able to administer morphine. (small doses, enough to help him remain comfortable)
Prior to being on Hospice he did spend a bit of time in rehab after a broken hip (a true slip and fall on black ice) The time at the rehab was a NIGHTMARE I was on them constantly for any number of things from getting a riser for the toilet seat (not even ADA height toilet) to washing his hands after toileting. The oral care that was supposed to be done daily was not.
The main reason I was able to keep him home was because I got the equipment that I needed to SAFELY care for him at home. I got a Sit-to-Stand then later a Hoyer Lift with a variety of slings so that showering him was easy, lifting him to change him in bed was easy. And SAFE for him and for me.
The other bonus was the house that we moved into when I realized a 2 story house with a small bathroom would not work was built handicap accessible. So it was perfect!


((hugs)) and condolences on the passing of your dad.

LH1971,

Welcome to the forum.

I am very sorry that you experienced this from hospice. I had wonderful experiences with hospice care for my brother and my mom. I hope something can be done in this situation to help your mom.

I just joined this forum mainly so I could tell my hospice story. So many people here think hospice killed their LO? Well, our experience was the exact opposite.

My mother was in the process of passing peacefully away in her home (from stage 4 breast cancer and copd, having already lived long past her oncologist's prediction)--eating little, sleeping a lot, with a little smile on her face--just the way we all picture it should be, when it's our time.

But for some reason hospice decided to interrupt this natural process and put her on a very powerful steroid. Once on steroids, mom 'woke up' and began demanding cigarettes and junk food constantly, "roid-raging" when she didn't get them. Her quality of life was awful, and she was wearing her husband out. He aged visibly, and lost a great deal of weight (as she gained it).

The shocking thing was, the hospice nurse didn't seem to notice or care. The fact that mom was still alive (although bedridden, helpless, medicated into acting like someone she would've hated) seemed to be all the hospice nurse cared about-- like it was some kind of triumph.

I didn't understand this until I remembered that at the initial meeting, the hospice representatives very clearly told us they were "NOT a non-profit." I thought it was odd at the time (why would that matter?), but now I believe their goal is to keep my mom alive for the $$. It's too late to fire them and it's not my call anyway, it's her husband's. But I wanted to vent to people who might understand.

My father was diagnosed with an inoperable brain tumor at 90 years old, and had hospice come in for end of life care in the ALF where lived with my mother. The first company irritated me with their lag in response time, amongst other things, so I made my aggravation known. That particular nurse was taken off the job and another, much more responsive nurse was assigned to our case who I liked very much.

My dad's end of life care, both in the hospital, in the ALF, and with hospice was very good and I have no issues with anyone. Everyone treated all of us with kindness, compassion and grace during the entire ordeal.

My only gripe was with the brain tumor that took his life and the fact that he died before I was ready for him to die. What I'm grateful for was the speed in which he passed, so we didn't have to watch him suffer for months on end.

My condolences on the loss of your father. Grief is a process and anger only prolongs that process and prevents healing from taking place. I hope you're able to find a resolution to your grievances and achieve peace. Best of luck.

Thank you and my condolences on the loss of your father. My dad was on hospice at home and it was not the experience we had been led to expect. Someone came a couple of times a week to check his vitals, and they supplied pain medications for the nurse to administer. That's it. He had multiple system failure and was just declining. When he died it took 3 hours for someone to respond and all she did was pour the pain meds down the sink and leave. So glad we didn’t have to pay for that.

A nurse from the dr's office suggested hospice. When we contacted the company approved by their insurance a nurse came out and did an assessment. She said he didn’t need hospice. A few months later another nurse checked on Dad and wanted to know why he wasn’t on hospice!

I am so sorry for your loss. I recently lost my mom. No matter what individual circumstances we have, we grieve after our family members die. We may be relieved if they were suffering, but we will always love and miss them. Love doesn’t die with death.

Having good care is a blessing. My mom had wonderful care. I will forever be grateful to each caregiver, nurse, doctor and social worker. Mom died with dignity and free from pain thanks to her incredible hospice team.

I would like to strongly encourage those who have not received proper care for a loved one to please be a strong advocate for them. They may not be well enough to challenge anyone themselves.

I think this is a marvelous posting, and I thank you for desiring to hear our feedback in order to improve the lives for others.

I also feel that no one should feel obligated to continue with a doctor or hospice organization that you are not completely satisfied with. There are many options to choose from. I am extremely loyal to those who deserve loyalty, but I would never hesitate to discontinue a relationship with someone that I wasn’t pleased with. All of us deserve the very best care.

Many of our parents looked at doctors as important authority figures. They had the attitude that they weren’t to be questioned. Our generation looks at them as part of a team, and feel that we work together to attain proper medical care.

Lastly, I know that it is a controversial topic, but for those suffering endlessly, and have not received proper medical treatment, and there is absolutely no hope for relief or a cure, I feel they should have the option to humanely end their lives. Sadly, not many states have made this legal. Many years ago I was crushed when I went to the hospital to see my uncle. He had suffered so horribly with cancer that he tried to slit his wrist and was very angry when the medical staff saved his life. Don’t we all deserve a peaceful death?

First, medical professionals are human as are their patients, and illnesses don't behave the same in any two people. That makes them hard to diagnose and treat, and the treatments will also affect different people differently. Unless there's gross negligence at play, I think second-guessing the medical professionals is pointless and just causes families more grief that will never be assuaged.

As far as hospice goes, I used it for my dad when he was diagnosed with inoperable cancer. I also fired the first company (Vitas), because their social worker wasn't interested in caring or being compassionate toward the family. I asked her what services they offered to support the family and was told "This isn't about you." I was also scolded for calling her to reschedule a procedure so my dad could see one of his granddaughters for the last time. ("I went to the trouble of scheduling this, and now you want to change it?")

When the hospice took more than 24 hours to return one of my calls, my next call was to fire them. I'm a big believer in anyone who provides a service understanding who they work for, and Vitas had a problem with that. I had a problem with Vitas, so they were fired and another company was brought in who understood what compassion and caring meant for the patient as well as for the family. We had an excellent experience from that point on.

My mother is now on hospice care at her memory care facility, and the company has been wonderful. My main point of contact is the nurse who comes to see her twice a week, and by and large the other people with the company have left me alone. They read me very well when I had the initial contact with them, and they respected my desires, such as having no need for a chaplain to call on us. This experience is very different that with my dad, as my mother is approaching six months on the program, while dad was on hospice for about three weeks in total before dying.

Your grief and loss are still very new, and I'd advise you to work through that rather than obsessing with what went wrong -- at least for now. I think with time you'll come to realize that hospice companies vary in quality as much as any other business, and as I mentioned above, medical professionals are human and are not able to hit the target every time with every patient. I'm no doctor, but I'd guess that your dad's cancer was likely not curable regardless of when it would have been diagnosed, and there are many factors to take into account with attempting to treat cancer in an elderly person. They can't necessarily tolerate the treatments a younger person could, and the treatments they might get could significantly reduce their quality of life. Do you think your dad had a better quality of life during those eight months he was misdiagnosed than he would have if he was recovering from surgery or going through radiation and chemotherapy? It's worth thinking about.

My dad was told the day he was diagnosed that any treatment they would have done on a younger person would have killed my dad. He was 88, but other than the cancer, which he didn't suspect, he was in perfect health. He took no medications, was active, was my mother's caregiver, and still drove with no issues.

If cancer treatment would have killed my dad, how might treatment have affected your dad? I certainly don't know, but when I compare my father's end of six weeks to that of my mother who has been ill and declining for seven years from things that, if left untreated, would have taken her life in 2014, I can safely say my father had a far better quality of life than my mother has had for the past seven years. Maybe my mom was meant to die at 85, but we didn't realize it and have treated her all these years so she can make it to 92 and sit in a wheelchair or bed all day, staring off into space, not eating, and not knowing anyone. At this point, we don't know what will take her. I do know my dad had quality of life for those six weeks, and Mom does not.

Worthwhile endeavour!
I have noticed a general complacency from GPs when treating the elderly. Let's face it, there is often so much to find from slow healing wounds to failing organs, muscle atrophy and osteo in the bones, cognitive decline, mood disorders and general loss of will to live.
Most just shrug their shoulders saying "They are getting old" and when the time comes to refer to specialists, the damage is already serious, or treatment not recommended due to risks and other side effects.
At the same time, we must be understanding that aging is not a disease, and decline is a natural process with almost everything hellbent on moving us on to the next plane of existence (in spite of medical breakthroughs).
Sometimes it is worth pondering "Why all the fuss?" particularly when the bigger issue is Quality of life - not to simply make us feel better about ourselves for keeping loved ones close, but the individual's desire to pursue living contentedly within their incapacity. To endure much suffering and lost time for an extra few months deserves serious reflection as to the efficacy.
Put simply, mortality is still beyond the control of the many dedicated doctors and professionals trying to perform the impossible. Accepting what is inevitable and equally unwelcome resides with finding inner peace that life must follow its course - nothing makes it 'better' or even 'more comfortable' necessarily. Think of it like being hit by a bus, but slowed down a thousand times without lessening the impact.

I’m sorry for your loss. My dad died last summer after many years of coping with congestive heart failure. He’d been hospitalized (one of many times) followed by a failed attempt at rehab, and came home on hospice by his choice. He’d truly reached a point where the joys of life were far outweighed by the struggles and pain. I was both incredibly sad and incredibly grateful that his hardships ended. When I look back at the overall experience, I’d say the mistakes lie within his many years of medical care. Much of it, things heart related and otherwise, weren’t fixes or even good for alleviating symptoms. There’s some sense that without intent, much of his care only prolonged his misery. I came away from it believing that many medical professionals should ask themselves why they’re recommending what they insist upon with old, fragile, sick patients