On Hospice Care for Throat Cancer- What to Expect?

Have you been able to speak with Hospice? They might be able to give you a good idea of what to expect since they have her medical records and know the extent of the cancer. Sorry that you are having to deal with this.

dmcfayden,
Is she eating and drinking? You should definitely ask the hospice nurse about this. The answer to your question depends on exactly where the tumor is, how fast it's growing, and how large it is.
Carol

She is having food ground up but still having trouble swallowing. Her speech has become more slurred. The tumor is growing in throat & neck. Hospice & her Dr won't give a time frame but indicate she will go peacefully. I just find that hard to believe. Thanks for responding

dmcfayden,
Does she want to eat? Is she able to drink? It's very hard to tell you what may happen when I have little specific information. I don't think she'll choke to death because I don't think you'll give her anything large enough to cause it to happen. I'm a hospice nurse and I'll answer you plainly because that's why you came here.
There's a dying process that's different for each patient, but there are common factors. As long as your mother wants to eat and drink, you can arrange for some kind of nutrition for her. Worrying about what's healthy or nutritious is not important now. She has to want it, though. If it hurts for her to swallow, she should be getting adequate pain medication. That's more important than food. As we go through the dying process food becomes something we don't want. The body isn't looking for calories and hunger goes away, eventually thirst does also. That's usually part of the peacefulness the doctor and hospice are talking about. There's little need for energy and in fact the work of eating and drinking can be strong deterrents. Somewhere someone may suggest a feeding tube or IV hydration. Unless the patient indicates the desire for that (and almost none do), you have to consider if you're prolonging life or death. The dying process can be lengthened by using things that would not happen naturally when trying to get food or drink into someone who doesn't need or want it. Once oral intake ends, when NO fluids are being taken in, most dying patients will die within 3 to 5 days. The way that happens is almost always that the patient withdraws socially, sleeps more and more, and then becomes unresponsive. There can be agitation or restlessness at that point and medication given under the tongue can help ease the agitation. That usually ends quickly (in a day or maybe 2).There's seldom any indication of pain because most of the body's systems are becoming impaired. From that point, the person appears to be sleeping. If the tumor presses on your mother's trachea (windpipe) she may have difficult breathing. The best treatment for that is morphine (again, drops can be given under the tongue). Saliva may pool in the throat or at the top of the lungs, it's gurgly sounding. A patch can be applied behind the ear that can help dry the secretions, but it's not for her benefit. It's hard to hear the gurgling, but it's not choking, it's pulling air through fluid. That is usually in the last day of life.
If the tumor compresses the carotid artery, half of her blood supply may be halted. If it ruptures or grows through the carotid artery, she'll become unresponsive and will die soon. I hope that helps somehow. I'll be glad to answer any questions.
Carol

Carol, thank you so much for your response. Mom is eating & drinking less. Unfortunately she fell yesterday and hit her head/face. A ct showed no fracture & she was sent back to her AL. She doesn't remember falling & is confused. The growth in her throat is growing so she has difficulty speaking. Her words sounds slurred. This was her 3rd fall since she has been in AL in just under a year. Her oxygen level & BP are good so it seems like she will keep going. It's very difficult to watch her decline. Your comments have been helpful.
Donna

Donna,
When I was in home hospice care and when I was in clinical courses for my degree in nursing, a patient falling was not "acceptable". It was like the administration's biggest fear, and as nurses we did all kinds of things to keep it from happening. An incident report has to be written up and better precautions taken. I hear that your mother is confused and that's a problem, but she's there because she needs assistance with the activities of daily living. Don't feel like you have to explain anything to me, I'm just saying this in case you're upset with the way she was injured. Assisted living facilities get inspected and their records are examined. Having a resident fall 3 times in less than a year should be a problem for them.
I feel so sad for you because it is a hard thing to watch when you're waiting for a tumor to end someone's life. That sounds cold and cruel, but it's reality. Confusion near the end is a blessing sometimes, but you don't have that "luxury". You're honoring your mother's wish and that's all you can do for her. If her breathing becomes impaired and morphine is prescribed, it will ease her breathing and calm her a little.
Carol

Head and neck is a tough cancer. Lots of radiation and tons of chemo.i respect your mom to opt out and let things go and work towards the passing. Good luck

Close to 6 month mark since moms diagnosis. Along with her dementia it has become very hard to watch. She is barely able to swallow liquids and is down to 106 lbs. Hospice RN says they can only give morphine if she asks for pain meds. She always says she's not in pain, I believe she is totally confused. I have complete medical authority but when I mention giving her something they make me feel like I'm just trying to dope her up until she passes. And guilt sets in. Don't know if I should insist or keep things as they are. They say they can tell by her body language if she's in pain but I'm not convinced. I pray she has peace soon.

Donna,
These are the same people who allowed her to fall a couple of times and from what you said it didn't sound like you gave them a hard time. You could have but worked with them which sounds like what they're not doing with you. Morphine is a loaded word that can cause a lot of misconceptions, and the only words of support I have when it comes to her care providers is that they have been warned/taught not to give narcotics unless it's clearly necessary. That's why you are under the impression that they may feel you're wanting to give it for the wrong reason. I guarantee that they've been accused by family members of doing that. If someone claims that's happening, they can get in a real jam with the law and all of the people who run the facility. I hate it because when someone is dying they should get whatever makes them comfortable. Morphine is a great drug at the end of most patients' lives. It treats pain, eases breathing, calms anxiety, allows deeper sleep, and is easy to administer. On the flip side is that if a dose is strong and more than is needed for pain it can cause respirations to cease.
You have options. If there's a nurse you trust who treats you well, talk to her/him about this and see if that helps. Find out what the doctor ordered. If it's to be given as needed, you have the right to say why you feel it's needed, There are a lot of behaviors that can indicate pain. With your mother's Alzheimer's, they are probably different than regular signs. If she's guarding an area, moaning, making faces when she tries to swallow, pulling back from movements she's been able to do before now, etc. Is she acting like she's hurting or anxious? Dealing with Alzheimer's patients can really be a challenge when they're at end of life. The main thing that bothers me here is that a hospice patient requires a different mentality from the care providers and that patient's family is JUST AS IMPORTANT, if not moreso, than the person who's dying. You should not have worries about her care and can't have regrets later. If your mother doesn't have a medication prescribed for anxiety you can ask the doctor for a prescription for Ativan (Lorazepam). It's often used in hospice care. Given your mother's diagnosis and the presence of tumor in her throat closing off the opening and pressing on things, it's hard to imagine she has no pain.
Carol

Carol, thanks for your response. I also find it hard to believe she is not in pain. When asked 99% of the time she says no. She is given Ativan & I've asked if that can be given more than once a day. She has expressed being anxious about being there but I think she is confused about her environment for one thing. I have talked to the Hospice RN again and he did mention the reasons behind not giving meds due to possible repercussions. I feel like the facility is understaffed and don't have time to address everyone's needs. It's very upsetting to have to clean feces out of my moms teeth/mouth & fingers. I've spoken to staff & management several times but nothing has improved plus my mother is having more frequent episodes of digging out her feces. I have not contacted corporate yet. I just wish there were an answer to our eldercare problem. It breaks my heart to see how they just seem to be left slouched in a wheelchair and left in a room like a heard of cattle. Since I work full time I don't get out ther until after management has gone and all I usually see are 2 CNA & a med tech. And sometimes I've searched all over to find them. I appreciate your response. It has helped understand some things better.
Donna