My mother (81) had stage 4 lung cancer that spread. The end of life care for her during the pandemic has been nothing short of inhumane.

My father is on Hospice and they have been wonderful. He has had excellent care.

I am so sorry about the treatment of your mother. My mother was in the hospital for 3 weeks with a variety of ailments. One being part of her heart not pumping. After the doctor convinced me she wouldn’t tolerate the 6 weeks of recovery from getting a pacemaker she suggested hospice. Which I agreed to trusting it was the right decision. 3 months later my mother has improved. But still has a heart problem which is causing bad circulation. Every time I mentioned how much better she is to the hospice nurse there was silence. So I decided to revoke hospice and get her some real medical care from real doctors and specialists. I’m not dissing hospice entirely but they do fail some patients and fail them horribly.

If your mom was no longer eating by HER choice then giving her food would do more harm than good. The body stops processing food and it would remain in the gut causing discomfort and possibly a blockage that would be painful and would normally require surgery to correct.
If your mom was no longer drinking by HER choice then giving her water would most likely result in aspiration leading to pneumonia and again fluid would remain in her system since the kidneys cease to function the excess fluid would result in edema and possibly the fluid leaking from her pores or a breakdown of skin.
In general the amount of morphine that Hospice provides to a family is a measured, prescribed amount and the amount delivered is not enough to kill a person even if the entire amount was given at 1 time. (I had the same thoughts when I gave my Husband morphine and I was reassured by the Hospice nurse)

I am so very sorry that you had a bad experience with the Hospice that you chose or was chosen for you.
(there are 2 types of Hospice FOR profit and NOT for profit I do not know if that made a difference in your case)
Hospice Workers the Nurses, CNA's, Social Workers and all the rest of the team are generally Dedicated and want nothing but the best for their patients. It is not easy to accept a new patient knowing that that patient is going to die. Most medical professionals expect that the patient that they help is going to get better, not so with Hospice workers. It takes a special group of people to help patients, family and friends through this.

If you think that you or your mom was not treated properly you can file a complaint.
You will get a survey and I urge you to fill that out it does get looked at and the information is discussed. If there was a particular person that you felt treated you or your mom with disrespect or an uncaring attitude call and talk to a Supervisor.

Pc — I agree , hospices (sometimes?) use the claim that they are keeping the person comfortable to actually kill them with medications. At least that has been my experience. My mom was always very sensitive to narcotics and sedatives. Hospice care never had a family meeting for us so not sure exactly how often she got them but the last time I visited her she was sleeping entire day but despite this was given more morphine when she simply moved a bit because sis was told that this was a sign she was in pain and needed it. A few days later I got call from other sibling that mom was imminently passing within a day or two so I should come . Since I live 4-6 hours away I needed to pack everything for days including for services so it took a bit to get leaving ..consequently she passed before I arrived and the funeral home had all ready picked her up. Also she donated her body to science and the home had released her to them so I was completely unable to say goodbye to her. I do know she continued to get her “needed meds” despite that I was trying to get there. As far as I know , and I was , along with my sister one of her medical appointees until I moved when I was second on the medical poa since my sister lived with her. Anyway..I did not have to daily witness the killing . She was allowed food or drink though the last few days of it she didn’t take much. I just feel like they need to be more honest about what they are doing . Mom had not been in pain really during her illnesses except for at one point ..during her last,hospitalization when she had a cough and breathing hurt , I think due to her ribs hurting from the coughing . Also at that time they barely gave her even Tylenol . She was lucid and told cna she had pain but then 30 min later when nurse came in with next shift she said my mom had no pain. I said she actually asked for something half hour ago..and they brought nada. We called and they said they needed to call doc. In a place with hospitalist still nothing after an hour. That admission was the first I heard her say she just wanted to die .

You cannot give food and drink to a person whose body is shutting down. Which means the digestive system is not working anymore. Its really does more harm than good to feed them. The Hospice was correct "just a dab on the lips". As said, Mom aspirated the water because she could no longer swallow correctly. And the pneumonia was caused by the aspiration. And the morphine will keep the person "knocked out" as will the anxiety medication. Hospice is so the person can pass peacefully and without pain. Sometimes that means they sleep for the rest of their time.

I am so sorry for your loss but it was the cancer/pneumonia that Mom passed from. My Mom slept the last 2 weeks of her life, she was in a nursing home. I would rather her be sleeping pain free then awake in pain and fearing the inevitable.

Hospice has grief counseling for families. You may find comfort in attending a session. Or maybe there is a Church that offers it or the Hospital Mom was in.

I pray you find comfort.

I am very sorry for your loss.

I very much agree with CWillie. Communication is key. When my mom was admitted into her hospice program, the intaking nurse sat with us for 3 hours going over the program, our questions, expectations, etc.; she explained in great detail the mission and purpose of hospice. She also *stressed* that mom was free to leave hospice at any point if she chose to do so, to pursue continuing treatment; and if she left hospice, there was no problem if and when she chose to come back into the program.

It also helped, in our case, that mom wasn't right at death's door; that we weren't in such a terrible emotional state that we couldn't comprehend what we were being told. I think that too many doctors don't bring up hospice as a viable option until too close to the end of life, when emotions are already running high, and people - both the person needing hospice and the people who love that person - are physically, mentally and emotionally exhausted. So the opportunity for hospice to help give a terminally ill person the best quality of life they can have becomes so very limited, and family doesn't get to see that aspect of hospice care; they only see the very last hours and days when our LO's need to be heavily medicated to make the end pain free.

I watched mom's hospice give the power to make her own medical decisions back to her, which was so very important to her. They spoke to her as a whole person, not just a patient with end stage CHF. They never pushed medications on her; they never discouraged her from eating or drinking; in essence, she could do whatever made her the most comfortable and happy. After years and years of fighting - because my mom was a consummate fighter as well - it was a relief that she could sit back and relax and let nature takes its course, without the fear of dying in pain.

I am sorry your experience with hospice was so dreadful; certainly, like anything else, hospice organizations are not all created equal. If you find yourself struggling with your grief and guilt, please consider talking to someone to help you navigate your feelings and get you through to the other side.

I'm sorry for your loss.
I think that most of us have an unrealistic expectations of what death and dying looks like. I also think that doctors, nurses and others who are in the position to help people during this terribly difficult time are mostly MIA instead of taking the time to explain what is happening, answer questions and tweak the care received.

I recently lost an uncle to metastasized prostate cancer and his closest family was traumatized in the opposite way than you OP, he was in desperate misery until the family stepped in and asked that treatment end, he was not at peace until he was moved to a hospice facility the day before he died. My own mother's death was three long days of struggle during which she was kept drugged out of her mind, for which I am grateful. To me Dylan Thomas' poem is the antithesis of what most of us hope for at the end of life, to "rage, rage against the dying of the light" sounds heroic but pretty much guarantees an ending that is not a peaceful one.

You're welcome.

You're exactly right. When mom passed, the head of the ICU was so "giddy" that the Pallative Doctor told him to leave. I know they wanted the room for someone else. The nurse was really nice, though. She was the one that called to let me know, mom had passed (the PCP? nope which was fine. I was glad to not have to deal with him and some of his staff anymore anyway)

We have not used hospice, so I can't address this from a personal perspective. However, you report yourself that your mom would choke and aspirate when you offered her sips of water. It seems entirely possible that the pneumonia that was listed as immediate cause of death was in fact aspiration pneumonia. Hospice does not force caregivers to deprive the patient of food and water--but clearly from your description your mom could not tolerate oral intake any longer. I know how terrible it is watching someone you love in the final stage of their life when cancer has spread. My dad had lung cancer that had spread to his liver, but he was very fortunate in not having much pain.

When a person is entering their dying process they no longer need/want food or drink, as their digestive system starts to shut down and it can actually cause more harm and be quite painful if food or drink is forced upon them.
I'm sure hospice must have explained that to you, or you could have asked them to explain.
When my husband started his 6 week dying process, he went without eating for 41 days(and never once asked for any food)and drink for over 25 days, before he finally went home to be with Jesus. He too was under hospice care in our home and while it was painful for me to watch him go through it, I knew that it was all part of the dying process, and the fact that my husband too was a fighter till the end, I believe only prolonged the inevitable.
I hope and pray that you are getting some grief counseling, so you can better process what you have been through, and so you can move forward in your life and rest in the knowledge that your mother is now at peace. God bless you.

Thank you for your response. Sadly, I have to agree with you. I just wanted a compassionate end of life service. Instead, I got to see the ugly side of the business model. I felt like my mom's life got the expedited treatment. "Who is next? What's the name of the new patient."

I'm sorry for the loss of your mom. There are compassionate hospice services, but they can be hard to find. The bulk of them are in it for the money, same as many hospitals.

Hi againx100,

Thank you for the kind words and response. My mom was a fighter her whole life (her personality) and all I could do for her was give her a cup of water while she was in bed where she would aspirate and cough with sips of water. I wasn't given alternatives in hospice. I was never offered a water drip for my mom. I know hospice says 6 months of care. I remember her begging for more water. I was told to give her a dab of it on her lips as advised by hospice. The body obviously needs more than that and mix in the hard narcotic pain killers with it and you have a recipe for death. The cancer didn't kill her and the medical records show pneumonia as reason for death not cancer. My mom was not in pain but I was told her body was shutting down and to give her the meds routinely. Very vague. The hospital was happy to release my mom with a DNR and to be free of her. Open bed needed for others. I guess life comes down to a game of numbers. Like when all the taxis cabs are taken and you have to wait forever.

Sorry that you lost your mom.

Are you saying that they would not allow you to give her food or water? Was she able eat or drink if it was offered to her? Many people start shutting down and refuse to ingest anything. With that advanced cancer, I would expect that the morphine would be necessary to manage her pain. It does depress your systems but keeps a person from needlessly suffering. I guess it's a fine line. Personally, I would prefer to be out of it than suffering the pain of end stage cancer.

It's hard to watch someone die. And to lose someone. Again, sorry for your loss.