if a person is on hospice care at home, does this mean that under hospice rules, he may not be taken outside the house or be taken for a short ride in the car during those times when he feels well enough to do it?
is the aim of Hospice to facilitate a person's dying by limiting or denying oral fluids or by overmedicating with tranquilizers. I had a hospice person tell me that I cannot /should not ask the patient if he would like something to drink? It was up to him to make the request. He was not unconscious and was able to say when asked if he would like a sip of fluid.
if a patient has no physical pain, should a patient be medicated with morphine for (emotional pain???) the patient was already being sedated for anxiety to the extent that he complained of being "so very exhausted".
Is it Hospice's aim to hasten a person's death by overmedicating and denying oral fluids???? to someone who is not yet unconscious?
Not only that but the aides that the family had hired were told not to give him passive exercises of his legs, not to offer him liquids, essentially not to stimulate him in anyway and though unspoken the reason was not to prolong his death.
Unfortunately at the time he was diagnosed with cancer for convenience , he had named his daughter as his health care proxy and hospice allowed her to use that designation as the person to manage all his health care decisions, to the point that when he wanted to be allowed to be taken out of the house for a short ride he was told he could not do that In fact the hospice nurse, his daughter and the hospice social worker brought him almost to tears telling him that it would not be allowed even if he felt up to it. I had to step in and tell them to stop brow beating him and that I would see that when he felt strong enough I would see that he was helped into the car and I would take him to the park. You see we had lived together for many years and he was in our home where he was under hospice care but the hospice people allowed his daughter to make all the decisions and in fact it was like pulling teeth for me to get them to tell me what medications he was being given , the dose and frequency as I was sure that she was over medicating him with sedation, tranquilizers and pain medication. Hospice even threatened me by saying that his daughter could take him out of our home any any time if I continued to object to their terms of care.
when he arrived at my home from the hospital, he was cheerful and happy to be home since he had been in the hospital for 2 months. He died 3 weeks after coming home and I believe it was because of being over medicated and discouraged from even asking for fluids to the point where he just gave up. During the last few days, no visitors were allowed , except for his daughter who stayed in my home from the beginning to the end, and a couple of family members whom she was on speaking terms. The room was to be kept dark, no TV or music , no talking to him , no offering of liquids though he was semi conscious , until about the last 36 hours.
For me it was 3 weeks of Hell and having googled Hospice services, it would seem that it varies according to the way the local hospice people interpret the international regulations as to what is "comfort care" and as long as I have my wits about me, I would never surrender my independence to Hospice services as I think that some in their zeal to help the patient die comfortably are in reality practicing euthanasia without the legal oversight to do this .
Hospice's aim is to allow death free from pain and distress.
If a patient has a life limiting illness but is not close to death, food and fluids should be offered as usual. Patients close to death typically have difficulty swallowing and attempting to feed them can be distressing and painful.
Morphine is used for pain and to ease breathing issues. Agitation is usually treated with an anti-anxiety agent.
However, most of us who have used them have been grateful for their support.
I will give you my experience with in-home hospice, which my mother voluntarily went on when it became apparent that her journey here was winding down.
Mom entered hospice in mid-August. She died beginning of October. When she started hospice, they gave us what is referred to as "the comfort pack". It contained medicine such as Tylenol and anti-nausea medication, medication for anxiety, medication for drying out throat secretions, and yes, it contained morphine. The morphine is not for "emotional pain". The morphine is used to control pain, or in my mother's case, to help ease her breathing. Mom had CHF; toward the very end, she was having a terrible time with her breathing - she was literally suffocating while still breathing before our eyes, because her heart wasn't strong enough to pump the oxygen-rich blood through her body. The morphine eased that. Mom died on a Thursday; we didn't open that comfort pack until the Sunday before she passed, when it was obvious to us that she was in extreme distress. At NO TIME did hospice "push" those meds on her. And hospice didn't administer the morphine - I did that. So I was in complete control with how much and how often she got it.
During her tenure on hospice, from the very beginning, they sent a nurse several time a week; a social worker visited once every 2 weeks to see how all of us were doing. The hospice chaplain called regularly. Since this was smack in the middle of the pandemic, we didn't get any hospice volunteers visiting, but they called. It was a community of service and support for all of us. They arranged for her meds to be delivered to the house; they gave us an oxygen machine and portable tanks; they provided us with a wheelchair and a nebulizer. If we had needed a hospital bed or any sort of bathroom equipment, they would have supplied that as well.
At no time did hospice tell me I couldn't take mom out anywhere. While she was able to get around, we often went out for drives, etc. just for a change of scenery.
When mom entered the hospice program, the intaking nurse told me that the average time people in this country are registered in hospice is 4 days. Because all too often, people wait too long to avail themselves of the services, and wait until they or their loved ones are literally on death's door; and then the rumor that "hospice killed my loved one" continues to perpetrate itself.
I found every person involved in my mom's care to be compassionate and kind, and always, always willing to do whatever they could to keep my mom comfortable. The day before she passed, when her nurse came to check on her - and by this time, mom was unconscious and unresponsive - when the nurse told me that she didn't think mom would last the night, she stood in the kitchen and cried with me. As bizarre as it sounds, that gave me more comfort than almost anything anyone else did for me. And since my mom has passed, they have reached out to me on a regular basis to see how I am doing, and to offer grief support if I feel I need it.
It's a terribly scary thing, to acknowledge that either you or someone you love is nearing the end. The only thing I can recommend is to call hospice and talk to them. A call doesn't obligate you to engage their services. And if your LO enters hospice, and they/you change your mind and decide you no longer want to keep them onboard - for whatever reason - that's ok too. You are allowed to come off their services and resume the health protocols you were using previously. They won't force you to remain in the program if you're unhappy with or unsure about their services. But please, if this is the route you're going to go, call them sooner rather than later.
Good luck.
Hospice never administered any medications, the daughter always did and she had a sheet which both she and an aide would sign whenever she dispensed some medication.
she would not let me see the sheet, nor would she tell me what she was giving him. A couple of times, I had to protest when she had to force his mouth open to get him to take the medicine, at which time she gave me the finger. It became a very hostile situation between us and what was worse, was that the hospice staff were on her side just because she was named his health care proxy.
The hospice team's role is to provide comfort and dignity to a person in their last days of life. They should only administer meds when and if they're needed. And what is emotional pain? Whatever it is (maybe psychotic episodes, anxiety?), morphine won't help.
My wife was in hospice care for 15 months and I found it to be an excellent service. Call various agencies and interview them.
My husband was under hospice care in our home for the last 22 months of his life. He was completely bedridden, so I couldn't take him out, but if I wanted to, I could have. They also never told me to withhold any drink or food the entire time, and it was my husband who during his dying process stopped eating and drinking all on his own.
And as far as any medications go, you will be the one administering them to your loved one, so if they don't need any, don't give it to them. I had full control over what my husband took and didn't take as far as his medications, since I was the one with him 24/7.
I'm sorry you've had such a bad experience with this particular agency. Like I said at the beginning, I would be looking into hiring a different one if I were you. None of them are perfect, but some are definitely better than others. I wish you the very best.
I’m not sure who you could have called for help in such a circumstance where he was treated with such disrespect by his daughter.
Adult children seem to often have trouble with the significant others of their parents. Especially when they are elderly. I suppose In hindsight your LO should have had you listed as his POA. Perhaps we all should write up in our Living Wills or Advanced Directives how we would want to be treated while on hospice.
MY DH aunt is on hospice for dementia. She has therapy weekly. She eats what she chooses and in general has a good appetite. She can go out anytime. In fact I recently learned I could even take her to the ER if need be without her losing hospice services so long as the reason for the ER visit was not for the reason she is on hospice. We don’t have a “comfort pack”. She does have oxygen and a portable because she did need oxygen one time. She has other DME.
When I read of experiences like yours I wonder about the health conditions Of the patient. If the unusual treatment was to avoid pain or discomfort. Even so, I would think pain meds could be given to help a patient who wanted to go out.
As in all walks of life, we find people who have agendas and what appears to be a lack of empathy and it sometimes seems individuals such as SO daughter have a desire to control to the detriment of the one they are supposed to be caring for. We truly put our lives in the hands of others in these times by our directives or lack of one.
I’ve been involved with patients on hospice several times and I’ve never felt anyone hastened a LO death. I’m sorry you had this experience.
The hospice nurse told me that the morphine was for "emotional pain"
He was very discouraged and angry because the treatment which he had high hopes for had left him an invalid and he did not want to live as an invalid and suffer the loss of his independence.
What is/was your standing in this situation?
Did your loved one realized that he could make his own requests?
What exactly do you mean when you say he was diagnosed with cancer "for convenience"? Do you believe he didn't have cancer?
After his course of chemotherapy, he developed chemo induced peripheral neuropathy of the legs, so that he could not walk.
He was admitted to the hospital where he stayed for 2 months as the doctors tried to reverse the damage done to the nerves in his legs but with no improvement , he was discharged home to hospice care.
His daughter came and stayed in our home, supposedly to help care for him, though she had ordered aides around the clock, but what she did was to get the hospice staff to look to her as the decision maker, leaving my partner and myself completely out of the loop.
He was so happy to be home , was eating fairly well, could stay up in the wheel chair for a couple of hours, but soon, Hospice with approval of his daughter took away all his routine meds including those for blood pressure and diabetes . In addition, she started medicating him on a regular schedule rather than prn with the drugs in the comfort kit- morphine for pain, though he had no pain, anti anxiety medication, though he seldom needed it as he was becoming lethargic, sleeping a lot, restricting his fluid intake (supposedly for fear of aspiration), though he had no problem with swallowing the medications she delivered into his mouth through a syringe. She even medicated him several hours before he passed away even though he was unconscious by then.
We had no privacy at all as the aides were told to watch him at all times and so they sat in the room near his bed when they were not tending to him.
It was a terrible 3 weeks.
I was talking to my mom's hospice nurse today, and she said the biggest obstacle they have to overcome is what hospice does and doesn't do. They do not hurry death but rather seek to enable quality of life over quantity.
It sounds like both the daughter and you had different ideas of what hospice entails.
Are all organizations the same? Absolutely not. So, it is important to research carefully before choosing one. Even after choosing, if you feel a need to discontinue services with an organization, it’s possible to stop using them and choose a new one.
There can be swallowing issues towards the end of life. A person can use a suctioning device if needed. Also, meds are not only given at this time to control pain but also to prevent pain.
Hospice nurses are very insightful and intuitive in determining what the patient needs. They see all the signs, plus listen carefully to what family members tell them.
I am very sorry for your loss and terribly sorry that there was conflict with your loved one’s daughter. Losing a loved one is painful enough, let alone having added anxiety and stress thrown in.