Hospice Care - What does it entail?

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AnnyWh0 Asked April 2016

Hospice Care - What does it entail?

My friend is in hospice care. We don't know how long it's been so as I had about 2+ months without seeing her as I had a health problem to deal with. When I was finally able to see her I was told she was now on hospice care. No other details. Her youngest child whom I have contact with lives a distance away and did not have the means to travel here. I contacted her and let her know how her mother was doing. She had not been contacted by her sibling which is her parents guardian. The sibling has refused to inform my friend's daughter of when the hospice care started or any information about their mother's medical condition. At the time of the court guardianship hearing the court said that the sibling was to not lock this daughter from the medical information, the big however is although said by the judge it was not written as part of the agreement. The daughter is requesting an emergency hearing to have it stated that she will have access to the medical treatment concerning their mother. Meantime and the point of the question is our concept of hospice care is that care is given to the patient that will assist the patient to be in comfort as much as possible. My friend found that the nursing staff is NOT feeding her mother. Her daughter tried to see if she could be fed by hand and she did eat, so it was not a problem with inability to swallow, etc. There is an DNR her daughter was told. Yet a DNR is another thing that we do not believe is aligned with not being fed. So I am asking if presenting a plate of food to a patient whom it is known is unable to feed themselves par for the course? This care home is quite expensive and in a residential setting and seems to be attentive otherwise, yet this seems like some sort of neglect. I think that an infant can not feed themselves so we feed them - that the inability to initiate or complete an action on one's own does not mean the need of the action will be ignored by others. If my friend fell on the floor or was coughing up blood it would not be ignored, help would be provided within the hospice status. I would like input from those who have been part of the hospice experience. What is the norm? Thank You

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score 0 · Answer 1

Thanks much for all of your replies to the post concerning my friend. Part of the problem for her daughter and then additionally for myself as her friend is that we are not entitled to know what more is going on. If she is in any discomfort or pain after the intake of food or fluid we are not part of the conversation. Her daughter did get a court date today to request the information. So she can understand the situation of her mother's treatment more fully and thus can make her own personal adjustments to the situation. However the court date is almost a month away and between her health problems and the lack of nutrition her mother may not last until then. Again we do not know when the determination was made and why. True there is likely little that can be done to give her mother greater time, yet the quality of the remaining time matters. And it appears without knowing more that her demise is ushered in rather than allowed to happen. In any case it's a decision by the guardian. I appreciate the input from everyone. It's something I will write down in my own instructions for the time I will fall into another's care. Thanks much for the replies.

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score 1 · Answer 2

Someone needs to talk to DON and SW, and i suppose it needs to be the guardian.

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score 1 · Answer 3

Greetings! Caring relative and friend of OP's here. I was there over the weekend. Saturday we visited the home in the day time and asked if she ate breakfast or lunch, and they said "Patient don't eat". Well, we came for dinner and they set us all up at a table together, about 5 of us family member, and I sat there and watched her eat fries, a hamburger and a bowl of fruit. Come back Sunday at lunch, she hasn't touched her plate (there was a plate in front of her). Nurse said "Patient don't eat." So we cut up a little chicken and rice and she took a few bites, but when dessert came around, the lemon cake, (Yum) she ate the whole thing.

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score 0 · Answer 4

Very good answer from cwillie. Mom had pancreatic cancer and live for two months after diagnosis. She could not eat, just could not. She would take a bite and that was it. It was her body's way of getting ready to die. Hospice never tried to feed her since she was able to decline or request food up until the end.

Hospice can treat illness that are not part of whatever disease is causing a patient's death. Their role is to make the transition easier and more comfortable.

I think sometimes people feel bad because they can't stop what is naturally happening and they feel they have not done enough for their loved one.

Also one of the problems with feeding a dying patient is aspirating the food into the lungs which just makes things worse.

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score 0 · Answer 5

The issue of feeding/eating seems to be determined by how close the person is to actually passing. I've been told that if the person is actively dying that food can be detrimental and cause discomfort - that they can not digest the food. I also have been told that hospice personnel can determine if actively passing is actually happening by a number of signs. So I guess in your friends situation this needs to be determined - perhaps it already has been but then my understanding is that the time they have left is short. My mother was put under hospice care towards the end of February. This week the hospice nurse has accessed that my mom is on a "steady decline" but not actively dying yet. Given this accessment I know my mother is given the opportunity to eat. Mom must be taken to the dining room or have food brought to her but she has been and continues to be able to feed herself. I think with your friend this could become a issue if she has needed assistance with eating for a while - so I guess there are a couple of things that need to be determined. Is she "actively" dying? Does she indicate that she wants to eat - does she have any appetite? If she is physically able to process food and wants it, is it being offered to her and with assistance? It seems a somewhat tricky line to walk. My father asked for food roughly 48 hours before he passed in a hospice facility. I was mad as hell for quite a while that food was never brought to him - I did not understand that he couldn't process it and would cause discomfort - I understand that now. Still, if my mother were to indicate she needed help eating and none was given to her - at this point in her passing process I would certainly talk to someone in charge to be sure food is offered and assisted with.

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score 0 · Answer 6

When people are on placed hospice care it is an acknowledgement that they are dying, maybe not today or tomorrow, but very soon. Your friend may have days that she enjoys food, and days where she has no desire to eat at all. Your friend may have truly enjoyed the meal her daughter brought, or she may have eaten only out of a desire to please her. As the body approaches death we need to eat less and less, in fact the food we do eat can cause problems because out body no longer has the ability to digest it properly. It may cause pain from reflux, or cramps from constipation as the food accumulates in the bowel without being expelled. It may even lead to bowel obstructions, which themselves can be fatal.

Generally food is the last thing on a dying person's mind, they may remember how good that ice cream sundae used to taste, but really have no desire to eat more than a mouthful. It is hard for friends and family because loving and nurturing are often tied up with eating, our holidays are built around special meals, when our loved ones are sick we prepare special diets to help them "keep up their strength". To stop feeding someone feels like murder, and in a health individual it would be. But at the end of life to force food does more harm. The dying aren't hungry, they aren't starving, they are succumbing to their disease.

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score 0 · Answer 7

I appreciate your comment - in my friends case she is able to eat, she has suffered several stokes so it's hard for her to take action to eat, she enjoys the process of eating. I would understand that if she was either fed or hydrated with tubes and I.V.'s that the decision to withhold food in some manner would be applied. Before my mother's death between - Parkinson's, Alzheimer's, Dementia, and Breast Cancer she was no longer able to eat. She did however appreciate some cooling water dripped into her mouth and some Chapstick applied to her cracking lips. Neither action extended her life, they just gave her some relief and comfort. I wish I knew more about her condition yet as a friend I have to defer to her guardian and hope the information will be passed to her daughter. I should say that my friend is not confined to a bed, she does converse and interact with us. The strokes have impacted her as can be expected, she is confined to a wheelchair as she has been injured from several falls. Again I appreciate your reply. Thank you

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score 0 · Answer 8

In the hospice situations I have been involved with, the patient did not eat but they were obviously beyond eating unless it would be by tube and in these cases that would have not been appropriate as death was imminent. I've heard of others who have been on hospice for long periods of time so I'm sure they were eating. There comes a time in the dying process when a person is more comfortable not having to digest food. Hopefully someone will answer who has more information. I'm sure if you search this website you can find questions and discussions on eating while on hospice.

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Hospice Care - What does it entail?

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