95 yr dementia mom in Hospice 4 yrs, at home with caregivers, RN visits 1x week. Has neck wounds not healing for over a year. Asked RN to send pics to Dr. Was told dr has no clue and that Dr does not do house calls. How can hospice get away with never having a doctor personally visit a patient? We sent pics to a friend that is a dermatologist dr & he said it is Squamous cell carcinoma.
Paula
My mom was diagnosed with squamous cell carcinoma - one spot that was serious & deep and surgery was done about 5 yrs ago. That dr had mama admitted to hospice (dr has since died). She was deteriorating quickly & but since then just continues to hang on. I give credit to my sweet care givers that love her. They do not want her laying in a bed all day to keep bed sores away so they use the hoyer lift through out the day (bed-wheelchair-lounge chair). Her skin is so very fragile. The nonstick pads can’t be kept on the sores due to not being able to use any tape at all.
No heroic measures have ever been done; she expressed that when she was healthy. I just want to know what the sores are so as to not aggravate them and to know how we can help with the pain.
There are Kennedy ulcers that break out on the skin. This is the breaking down of the skin. This happens when the body is shutting down and death is imminent.
Hospice is a choice, not a mandate, when my mother was 94, she too had cancer on her chin. The last thing on earth I would do was expose her to cancer treatments of ANY kind. She was at end of life and enough issues already to choke a horse. My goal with hospice was to STOP the insanity of doctors, ERs, hospitals, and curative treatments of ANY kind. The goal was to leave her in peace and comfort care until it was time for her to depart. This is the whole purpose of hospice.
Good luck.
The Hospice SHOULD have a Wound Care Specialist that should see your mom.
Hospice can approve a visit to the Hospital or to another doctor. (Particularly in this case where the problem that you are seeking care for is not part of what qualified her for Hospice)
You can also "drop" Hospice seek care then she can be qualified again for Hospice.
Now the biggie question....
If it is a squamous Cell Carcinoma what will you do? Will you see treatment? Surgery?
Very good possibility that your mom would not do well with any treatment.
If the wound is not bothering her. If it is not painful I would probably leave well enough alone.
If it is bothering her you can discuss with Hospice about pain and symptom management.
Also if this is the response that you have received from the Hospice nurse I would call and ask to talk with her/his Team Manager.
If you are not satisfied with that I would place calls to other Hospice in your area and seek another Hospice that would take your concerns seriously.
Mom has not ever seen a hospice dr—reason for my frustration. Dr will not make a house visit to verify what they are. These sores have been getting worse over this past year. They are now draining & sometimes bleeds and are very painful. Treatment given so far has been for fungal infection and use of lidocaine.
If it is cancer-my mom could not handle surgery so we would choose to not do that. The nurse only offered pain med with codeine which will make my dementia mama so lethargic that she will not eat. At this time she is taking Aleve 24/7. She has been bed ridden since broken legs 5 years ago.
I asked about a wound dr and was told that in the future the hospice will have access to send in photos to the dr for advice.
This is difficult because my mom is in Ga and I live in Ohio. She has 24/7 caregivers that I manage and there are 4 cameras in the home in the locations my mama goes (a hoyer lift is used to get her out of the bed daily).
I was told last week that she is being assigned a new case manager—maybe things will improve then.
The first thing that makes me curious about all this is that you say that 95 y/o has been in hospice for FOUR years. That is quite unusual. Hospice requires a doctor's order, and that doctor is "proclaiming his/her professional opinion to Medicare that the patient is expected to die within 6 months". Now, I'm not saying patient must die, or they are "out of there"; hospice is often increased, and sometimes even several times. I have heard of people on hospice for as long as 1 1/2 years.
Hospice is end of life care. By definition, death with comfort is expected. It is the "goal" if you will.
When a person enters hospice they are saying they don't want ANY heroic measures and they don't want ANY TREATMENT TOWARD CURE, meaning they understand they are dying and wish to die with comfort care only.
Hospice does have doctors, but they seldom need to see patients. A nurse sees the patient once a week. They order COMFORT care medications, and sometimes -- with sores --even have a specialist come in for special treatments for comfort. In the case of sores that appear to be squamous cell CA, which often are painless, not a lot would be done in a hospice situation.
You are free at any time, as a POA or MPOA (Medical Power of Attorney) to remove mom from hospice. She could then be seen by a doctor but I do think as an RN, that treatments for cancers would quickly lead to her demise. They are quite tough to take.
I would speak with the Hospice RN. Discuss all this. Then make your decisions as POA or next of kin as to what you feel is best for your Mom, and I wish you the very very best of luck.