My experience with Hospice has scared me tremendously. I feel like Hospice killed my father. Please help me change my mind.

Um, before we go and look at your youtube slot -

what kind of products do you specialise in marketing, please?

Hi BarbBrooklyn - I think you are jumping the gun a bit. I work in software sales. I am not pushing any products. By the way I used to work in Brooklyn with my Dad who the story is about. Worked in Midwood High School and Brooklyn college on Bedford avenue. Would a spammer go as far as this to share some details of their life. I put product marketing specialist in my profile, because I did not know what else to put. I appreciate your concern for the community.

I watched the video and I'm sorry for your loss. You don't mention if your various family members were in different hospice facilities or not, but if so, and you think unethical things occurred, you should take legal action rather than painting all hospice as something bad. My personal experience was with in-home hospice for my FIL who passed from pancreatic cancer and the nurses were wonderful and he went peacefully so I can't speak to any other experience. Hospice is about comfort and peace and palliative care. May you be comforted in your grief and and have peace that transcends understanding as your heart and soul heals.

First, I am so sorry for your losses. It is so hard to lose the people we love. I did watch/listen to your video. There is just so much there to address, from not having all the information you needed (both the hospital and hospice not giving it to you and you/your family not seeking it), to the intensity of being present as one leaves us.

Before I go any further, who signed the DNR and who signed the agreement for your dad to go into hospice?

I am very sorry for your loss of your father, and of your grandmother. One blow after another in this way must have left you very tender and vulnerable.

If you don't mind my asking, when exactly did your father pass away? I haven't yet watched all of your YouTube story so forgive me if the information is all on there.

My first thought to share with you, in your circumstances, is that there isn't any good way for these losses to happen. Angry, sad, depressed - and perhaps rather shocked, too? - are all normal results of losing somebody you love, that simply. Some hospice teams are extremely good at supporting family members, explaining what is happening, and managing expectations; but unfortunately some are - well, not good, to be blunt about it.

I'd rather know how long you've had to adjust before I add anything, I think.

Sorry for your loss. My experience with hospice was wonderful. Both my mother and father passed away under hospice care. To me it seemed like the most peaceful way to end life. As it was explained to me, hospice is for the very end of life when all other medical care has been exhausted. It is palliative care, managing pain. It is not the continuance of medical care to treat a condition. Both of my parents entered hospice care when they had become unresponsive and were basically asleep all the time, not eating or drinking at all. I believe in both of their cases all medication was stopped except for morphine. I could be wrong, perhaps a few were continued. Both passed within two weeks of entering hospice but while I was at the facility I saw many family members of other patients who had been there months. I hope this helps.

I am so sorry for your losses.

I will not watch your video because I don't need to know the whole story to say, hospice is specifically for people that have been determined to be actively dying, with an outside time frame of six months. Since no one knows when someone will die, it is a situation based on prognosis by medical professionals, there are cases where people die overnight, 1 week, 3 weeks, etc. there are people that get better and graduate from hospice, but every single person has something that is taking there life, when is the unknown.

I wish that someone in your family would have said, hey we don't understand what is going on and he has a DNR is not an appropriate or acceptable answer, get us someone to help us understand. DNR doesn't mean let him die, it means no heroic measures are to be used to keep him alive. Whomever said that to you should be reported to every agency that provides oversight and their supervisors, and anyone else you can think of. Just so wrong in so many ways.

If your dad was on medication that was required for him to live they usually do stop actively treating any disease or illness, unless doing so causes suffering. However, the family could have provided him his medications, hospice doesn't administer all the meds unless he was in a facility and that usually only occurs because someone has days to live. Yes they offer respite for those on home hospice, but to be admitted requires some serious medical situation, my granny was transferred to one at the end of her life, from a nursing home and she was in such pain that it required her to be drugged out and unresponsive, far better than her suffering in misery for the 2 weeks she lingered.

Hospice can have bad apples, just like every industry. Remember that you experienced 2 situations with 1 company and you should report them if you believe that they actively assisted your loved ones deaths, it won't help you but it will help someone else. That's how you honor them at this stage, use their experience to help another family not face the same situation yours has.

I have had multiple family members and friends that received the best care possible from hospice, it kept them from suffering as they died. It can truly ease the experience for everyone, hearing someone screaming out in agony hour after hour is a trauma that no one should ever have to go through. Hospice may have kept your family from experiencing that kind of passing for your dad and grandma.

Hospice is only suggested when a person is dying, that is the most important thing to remember.

May God grant you grieving mercies and peace during this difficult journey.

While the YouTube thing makes me highly suspicious as well I don't want to discount the very real feelings, guilt family members can have after a LO passes so I'm going to respond based on your question without the YouTube story reference.

During so many terminal illnesses there comes a time when the measures to keep one alive are doing more harm than good or less good than is worth it, sometimes causing more suffering than benefit and while a difficult distinction one has to consider who the measures are being taken for, the patient or the family and often that's when Hospice is suggested and considered. When a patient qualifies for and is put on Hospice Care it is because they are nearing the end of life, they are terminal, death is imminent and the patient and or family have decided to stop battling the inevitable and simply manage pain, pass in the most peaceable way possible. It's a choice not a requirement but I sure want that for my LO's and myself.

It's also true that when you stop maintenance medications and procedures that are extending life for them (not their own bodies doing the work) it's apt to accelerate their passing but it can also remove side effects that are causing negative symptoms and allow a period of more clarity and seeming improvement that gives the family a renewed hope things are getting better just before the patient passes from the underlining disease and organ failure medications may have been fending off. This has nothing to do with Hospice and everything to do with the bodies natural end of life, the patient and his or her body is now in charge of deciding, the medical professionals and family are no longer in charge and working toward extending life. Hospice however is there to keep the LO and family as comfortable as possible during this time so if the disease process a patient is dying from causes excruciating pain they are there to manage that, sometimes there is a choice between being awake and aware suffering with pain and "feeling no pain" if you will, that's a choice but I think their default like mine would be is as little pain and suffering as possible. Also when a patient goes on Hospice it's because they are close to the end of their journey, there is no "cure" but patient and family has been on a roller coaster of acute care, maintenance care, new procedures, adjustment to new care, "new normal" so it stands to reason that the move to Hospice feels like a new set up that you will settle into over time and in some cases it is but in many cases it isn't a long term situation, it isn't meant to be and once it's all over it can feel like a Lo's passing was so quick after Hospice came in that it's a natural question for those not a peace with the passing. Your right it is important for the Hospice representatives to be clear about the facts and what to expect while being kind, caring and gentle and I think most are but family members aren't always as ready for these final days as the patient and simply aren't ready to accept the inevitable and make the most of the time Hospice provides but I don't think that's about Hospice, I think you would be second guessing whatever the last care giving decision was before your Dad passed and what you really need to focus on is letting go of the self imposed guilt you are feeling. You have nothing to be guilty about, was your dad in pain, was his suffering minimized at the end, was your grandmothers? Focus on the benefit they had by the passing going quicker and hopefully more peacefully that it was before you all decided it was time for Hospice.

These are my takes on the Hospice experience anyway but my family had a wonderful experience with Hospice and my uncle who passed from cancer.

Continuing my response...it might benefit you (and any family members) to contact the hospice to review what happened. It might give you a better understanding of what their process was, how the care plan was established, why they didn't explain things to family about medication changes, etc. I am also wondering if your father was much further along with his illness than he let on. Respiratory disease is exhausting. I appreciate that your dad always powered through but he may have reached the point that he just couldn't do it anymore. Please don't be offended when I say this, but based on your words, your family had a lot of expectations of him getting back to normal. He already had a terminal lung disease and these can turn very quickly.

Regarding the doctors declining to perform the kyphoplasty - they gave you their best recommendation based on your dad's physical/medical status. Your dad could have insisted, or someone could have insisted on his behalf, but it would have been a bigger risk than surgery typically is. Doctors have the right to refuse to do a procedure they feel is too risky vs. the potential outcome. It's hard to hear, I know.

And hard as it may be, your dad may have had a perfect understanding of what he signed and opted not to tell everyone. Or both he and your mom may have been confused/misunderstood when hearing the words "manage the pain" and "keep him comfortable." But those are the exact things hospice is meant to do when someone is at end of life. Palliative care is not hospice, but hospice does include palliative care. The only one who knows for sure if this is the path he meant to take is your dad. You could ask your mom as well.

It seems the reference to the video has been removed from the main post. I chose a video format instead of typing pages and pages of text. I do present a heart felt experience and I am not negative about hospice at all.

Search YouTube for ycRJ7X27LuI

Everyone going into hospice is terminal. My only experience with hospice was my 89 year old father in law. I was the one there with him except for night time. He was already a DNR. His brain was sharp, but he developed sepsis & kidney failure, pressure sore to the bone (got that at hospital), for practical purposes he wasn’t conscious, then a super-bug UTI. He had already stopped eating days before, so even before the diagnosis we knew It was bad. The activan & morphine kept him pain free & calm. He would NOT get better... not with massive antibiotics, not with a feeding tube, not with dialysis. Five days in hospice. Did the morphine & Ativan help him die a little quicker? If so, thank God!

So very sorry for your losses. Watching a loved one pass is always difficult. It is human nature to want to do whatever it takes to make a person live or get better, but the fact remains that none of us are immortal and there are some things no one can live through.

My most recent experience with hospice was with my MIL. She passed April 2nd. At the end of February it was discovered that her colorectal cancer had returned with a vengeance. By March the cancer was growing at a rate of 26% per week. Chemo and surgery were considered, but even with those her life would only be prolonged by a few weeks. And those weeks being miserable recovering from surgery and the effects of chemo. She was a very Christian woman and said she was ready to give all control to God. She entered hospice of her own free will, no more procedures or meds because as she said “what’s the point now?” She still directed when she wanted foods, liquids, and pain meds. She stopped wanting food after a few days, it hurt her to eat. Liquids stopped when she became unresponsive and even before that she didn’t want much. We knew with the type of cancer she had the pain was unimaginable so once unresponsive that was getting increased. It was 2 weeks from entering hospice to death. She was able to say goodbye to every one of her 14 grandchildren, her mother, brothers, cousins, and various family and friends. When I cried at her bedside she told me not to worry about her, she was going to a good place. Hospice nurses checked in frequently and responded to all questions caringly.

The thing to remember is that hospice is letting the person die as they naturally would without all the modern medical interventions, but with pain and anxiety relief to make it comfortable. And if it was your father’s choice, then it was in fact honored. The question for some of us is “Why prolong the inevitable?” To me, prolonging life with no expectation of a meaningful recovery is cruel. My stepmother was one of those, kept alive with modern medicine after two strokes left her bedbound, no use of hands, no speech. That isn’t life, that’s merely existing. She decided on hospice as well, but lived another 9 months. I don’t know why.

I hope you find peace as these experiences are not easy and make us question our morals in just standing by and letting someone we love die. Understand it was probably the most loving thing to do in the end.

*edited to add...there are different levels of DNRs. There’s no heroic measure but everything else to continue effects to stay alive, all the way down to no more medication, not even antibiotics or blood pressure meds, and zero and no heroic measures. If the DNR stated no life-prolonging medications and or procedures then that has to be honored as well. (Learned this when my stepmother requested a full DNR after refusing feeding tube and IV meds after an infection).