Anonymous wrote:

Anonymous wrote:If I were in lots of pain on oxygen could not walk and had trouble breathing (assuming. No hope of recovery). I would want pain relief. It does not sound like that medication is providing much quality of life! Hospice kept my Dad comfortable till the end. We were grateful for that

OP here, really appreciate all the feedback! There is definitely no hope of recovery here. The medication is ofev and it's for pulmonary fibrosis. I think if he went off it, it would make breathing even more difficult than it already is. I'm wondering logistically why hospice doctors would be able to provide better pain relief than regular doctors though. Are hospice doctors just more willing to provide morphine because there is less of a liability issue?

To your pain question - absolutely. Hospice drs are experts at pain management. THE experts. They are better at it and it was the number one benefit for us. It also helped to have the goals of care aligned, stop all the back and forth with hospital and drs.

People here are mixing up going into a hospice facility with the Medicare specific transition to hospice status.

My FIL was in a hospice facility and it was very soothing for him the only issue was an issue over whether he could still get insulin - the hospice facilities can be very black and white about the no meds but pain killer rules that are not good in certain situations.

My father was on the Medicare hospice status and it was awful. Basically you get no medical care whatso ever except a place that Medicare contracts for which sends a nurse to you 2x a week and you are on your own (at least that was where we wound up). There was zero benefit to my dad and it was very stressful not having access to a doctor as he was dying to make sure we were making him as comfortable as possible - through seizures, temperature and breathing issues etc.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do you know for sure the medication wouldn’t be covered?

I don't know *for sure* but it's an insanely expensive drug (ofev) generally understood to be used to treat a disease (pulmonary fibrosis) rather than enhance quality of life, even though enhancing quality of life is definitely a secondary effect. I can't find anywhere to check that gets specific with medications. Everywhere I look lists general guidelines which heavily imply to me that it would not be covered. If anyone knows of a resource where I could look/call that will know specific medications rather than guidelines, I'd love to hear it.

You don’t go to hospice until you’re ready to stop all care that prolongs life

This, but we did hospice and they saved my MIL's life and improved it. They worked with the doctors to fix the diet, medications and more and she improved to the point they had to pull her off hospice. As soon as they stopped coming, the nursing home went back to their old ways and she died within a few weeks.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NOT MUCH and it means you can't go see your old doctors most of the time!

Stay away from hospice until you are within weeks of dying.

My dad got two nurses visits a week and a twice weekly CNA bed bath. It was NOT WORTH losing his doctors.

We kept our same doctors.

That doesnt make sense. They are no longer allowed to treat you once you are in hospice. Hospice fired my dads doctors and made us use the hospice doctor who LITERALLY NEVER MET HIM OR EVEN DID A VIDEO VISIT.

Same experience here with my 40-year-old sister. Hospice drops you the second you call a doctor. Oh, and by the way, they administered a lethal dose of morphine to end her life more quickly than it would have otherwise. Horrrible horrible experience. Do not ever go to hospice. It is a racket.

You had a bad hospice provider.

Anonymous wrote:

Anonymous wrote:My mom is in memory care. When she was still cognizant she’d say the last thing in the world she’d want for herself is to be in a situation where she didn’t know what was going on around her. And here we are. I’ve struggled psychologically with her care- do I prolong her horrible quality of life by continuing to have them administer her heart, cholesterol and blood pressure drugs? Or do I cease these and let the chips fall where they may?

A few months ago she’d taken a turn and the facility called me to tell me, and asked if I wanted them to call an ambulance. What I didn’t realize they were asking was if it was worth it to treat her. I opted to have them call, my mom had sepsis and would have met her end that way if we hadn’t intervened. I still struggle if I made the right choice. I love her and want the best for her. It’s so hard to be responsible for decisions that literally impact whether another person will live or die.

It is so hard. We went the other way. Chose hospice for my Dad who had sepsis and also had Parkinsons. He lived for about 7 days with no food or liquid. Could he have survived? I don't know. I do know his Parkinsons would mean he would never have a quality of life. I am not quite at peace with it though.

Find your peace knowing you did the best you can. End stages Parkinsons is miserable. You made the right decision. He would not have had quality of life living with Parkinsons and a memory care unit where he got minimal care. My MIL had severe early onset dementia (so died in her early 70's from it) and she suffered from 8 years with it. She also lasted about a week at the end. It was a blessing for her to pass, though we still miss her, because she had no quality of life and was suffering. She didn't deserve to live like that. I hope to drop dead.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NOT MUCH and it means you can't go see your old doctors most of the time!

Stay away from hospice until you are within weeks of dying.

My dad got two nurses visits a week and a twice weekly CNA bed bath. It was NOT WORTH losing his doctors.

We kept our same doctors.

That doesnt make sense. They are no longer allowed to treat you once you are in hospice. Hospice fired my dads doctors and made us use the hospice doctor who LITERALLY NEVER MET HIM OR EVEN DID A VIDEO VISIT.

Same experience here with my 40-year-old sister. Hospice drops you the second you call a doctor. Oh, and by the way, they administered a lethal dose of morphine to end her life more quickly than it would have otherwise. Horrrible horrible experience. Do not ever go to hospice. It is a racket.

Is the expensive medicine the only or best thing to help your dad breathe, OP? There might be other meds he can take if you’re not concerned about prolonging life.

Hospice is simply a collection of “services” coordinated by a hospice agency - nursing, social worker, pain management, etc. They will come visit your loved one at your home.

These agencies will compete for your business; I had no idea how aggressive hospice agencies could be, but I suppose there is good money in it. Do your research and choose a good one.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do you know for sure the medication wouldn’t be covered?

I don't know *for sure* but it's an insanely expensive drug (ofev) generally understood to be used to treat a disease (pulmonary fibrosis) rather than enhance quality of life, even though enhancing quality of life is definitely a secondary effect. I can't find anywhere to check that gets specific with medications. Everywhere I look lists general guidelines which heavily imply to me that it would not be covered. If anyone knows of a resource where I could look/call that will know specific medications rather than guidelines, I'd love to hear it.

You don’t go to hospice until you’re ready to stop all care that prolongs life

This.

Anonymous wrote:My mom is in memory care. When she was still cognizant she’d say the last thing in the world she’d want for herself is to be in a situation where she didn’t know what was going on around her. And here we are. I’ve struggled psychologically with her care- do I prolong her horrible quality of life by continuing to have them administer her heart, cholesterol and blood pressure drugs? Or do I cease these and let the chips fall where they may?

A few months ago she’d taken a turn and the facility called me to tell me, and asked if I wanted them to call an ambulance. What I didn’t realize they were asking was if it was worth it to treat her. I opted to have them call, my mom had sepsis and would have met her end that way if we hadn’t intervened. I still struggle if I made the right choice. I love her and want the best for her. It’s so hard to be responsible for decisions that literally impact whether another person will live or die.

I think thinking about as "worth" is wrong. Its asking if that is what you want for her. My mom declined to call an ambulance at the end for my grandmother. It appeared that she had a stroke or ?? She called her doctor who asked a similar question. My grandmother always hated hospitals and did not recover easily from hospital stays. She died quietly at home 2 days later at 95. No regrets.

Anonymous wrote:My mom is in memory care. When she was still cognizant she’d say the last thing in the world she’d want for herself is to be in a situation where she didn’t know what was going on around her. And here we are. I’ve struggled psychologically with her care- do I prolong her horrible quality of life by continuing to have them administer her heart, cholesterol and blood pressure drugs? Or do I cease these and let the chips fall where they may?

A few months ago she’d taken a turn and the facility called me to tell me, and asked if I wanted them to call an ambulance. What I didn’t realize they were asking was if it was worth it to treat her. I opted to have them call, my mom had sepsis and would have met her end that way if we hadn’t intervened. I still struggle if I made the right choice. I love her and want the best for her. It’s so hard to be responsible for decisions that literally impact whether another person will live or die.

But it's not a value judgment on her life. This is what so many family members struggle with, and why when I was practicing law I provided free services to clients to prepare living wills and advanced directives.

Sepsis is a relatively quick end compared to lingering for years with advancing Alzheimer's. I don't fault you, poster, and I laud you for talking about the difficult situation you were put in. Your mom should have, while still competent, put in place her own refusal of treatment and DNR directives and the parameters around that choice.

It's a very painful thing as a child or other loved one to be asked to decide the fate of another person in the medical realm. We are already suffering anticipatory grief and just want our loved one healthy again, no matter how much reality tells us this is not an option. For many people it is too much to ask them to make an active decision to ease their loved one out of this life rather than using all medical intervention possible to keep them here, because of course we adore and value them still. But it isn't a value judgment, even though it feels like it.

We are really failing as a society on this issue.

Anonymous wrote:My mom is in memory care. When she was still cognizant she’d say the last thing in the world she’d want for herself is to be in a situation where she didn’t know what was going on around her. And here we are. I’ve struggled psychologically with her care- do I prolong her horrible quality of life by continuing to have them administer her heart, cholesterol and blood pressure drugs? Or do I cease these and let the chips fall where they may?

A few months ago she’d taken a turn and the facility called me to tell me, and asked if I wanted them to call an ambulance. What I didn’t realize they were asking was if it was worth it to treat her. I opted to have them call, my mom had sepsis and would have met her end that way if we hadn’t intervened. I still struggle if I made the right choice. I love her and want the best for her. It’s so hard to be responsible for decisions that literally impact whether another person will live or die.

It is so hard. We went the other way. Chose hospice for my Dad who had sepsis and also had Parkinsons. He lived for about 7 days with no food or liquid. Could he have survived? I don't know. I do know his Parkinsons would mean he would never have a quality of life. I am not quite at peace with it though.

My mom is in memory care. When she was still cognizant she’d say the last thing in the world she’d want for herself is to be in a situation where she didn’t know what was going on around her. And here we are. I’ve struggled psychologically with her care- do I prolong her horrible quality of life by continuing to have them administer her heart, cholesterol and blood pressure drugs? Or do I cease these and let the chips fall where they may?

A few months ago she’d taken a turn and the facility called me to tell me, and asked if I wanted them to call an ambulance. What I didn’t realize they were asking was if it was worth it to treat her. I opted to have them call, my mom had sepsis and would have met her end that way if we hadn’t intervened. I still struggle if I made the right choice. I love her and want the best for her. It’s so hard to be responsible for decisions that literally impact whether another person will live or die.

Hospice helped ease my mom’s suffering and our anxiety about the end. While I was initially disappointed by the minimal visits in the early days, that’s not really a criticism since it was more than she had before. The focus was on making sure my mom was comfortable and treated with dignity. We hired extra help as needed. The hospice doctor visited her several times and any time between visits that I called and asked for someone to come, they sent someone. Her nurse was AMAZING! They do allow you to go on and off hospice if you decide to pursue medical treatment. My mom had her lungs drained at one point and it was no issue to go off for a day. We used JSSA and I had absolutely no complaints.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:If I were in lots of pain on oxygen could not walk and had trouble breathing (assuming. No hope of recovery). I would want pain relief. It does not sound like that medication is providing much quality of life! Hospice kept my Dad comfortable till the end. We were grateful for that

OP here, really appreciate all the feedback! There is definitely no hope of recovery here. The medication is ofev and it's for pulmonary fibrosis. I think if he went off it, it would make breathing even more difficult than it already is. I'm wondering logistically why hospice doctors would be able to provide better pain relief than regular doctors though. Are hospice doctors just more willing to provide morphine because there is less of a liability issue?

My father got regular morphine injections with hospice. They told us morphine made breathing easier. He never struggled to breathe..he just stopped.

Same here. My father was out of pain, but personally I felt like they gave him morphine until it was at a level that he passed away. He was lucid when he went into hospice but rapidly deteriorated and was not lucid once there. I have mixed feelings about it. One the one hand, he wasn't it pain and he would have had an awful quality of life if he stayed alive. On the other, I felt like they accelerated his death.

Not picking on you poster, and my condolences on the loss of your dad.

What you said is at the heart of hospice versus regular medical care, and the weird psychological stuff that comes into play from patient and family members.

Regular medical care is built to aggressively treat disease, even terminal disease. As someone who worked more than a decade in the medical field and mostly around terminally ill patients, I’ve met many doctors, even oncologists, who just don’t accept death as the natural part of life that it is. Many of these doctors push patients to the outer limits of treatment before ‘letting’ them accept their fates - and yes there is a lot of weird manipulation that happens because most people put doctors on pedestals.

You recognize that your dad’s quality of life was terrible and staying alive it was not going to improve. But you are suspicious that hospice caregivers helped him die quicker.

Well, they very likely did. Not by killing him, but by not hounding him to continue with aggressive intervention on terminal illness.

Some people just struggle a lot more with death than others. Most people who work in hospice as I did for most of the last decade are more comfortable recognizing that death is a natural transition and do everything to help patients release fear and anxiety about death and to experience that transition with the greatest ease and comfort possible. Death is a sweet escape for people suffering incurable illnesses and terrible quality of life which medicine cannot cure or fix.

I hope our society and our medical system works harder in future generations to talk about death and demystify end of life and help families to really support their loved ones on that journey instead of so many people dying in hospitals after the failure of many very expensive and hopeless aggressive interventions.