My mother is on dialysis and has a lot of other significant medical issues it has been recommended that we get a hospice consult although she continues to take dialysis three days a week. She is refusing other types of treatment such as going to the hospital for sleep apnea test. Also she just looks miserable, she suffers greatly from the dialysis treatments at this point, when is the time to seek hospice and what can I do?
Palliative care does not address end of life; it addresses chronic conditions, and provides home care, a visiting doctor, some therapy (depending on professional assessment of whether a person can make progress in that area or has plateaued). There may be home health aid care as well; I didn't ask about that.
Hospice is for someone who has been diagnosed as being in a terminal state, not necessarily the 6 months that's been the typical standard. I've read here that the 6 month period is no longer the standard term, but I don't know anything more about the longevity issue on hospice.
The hospice patient would be more medically compromised with conditions that are more medically serious and will cause imminent death.
Palliative care, on the other hand, could address a situation where someone has COPD and dysphagia, or other co-morbidities, but still is viable, as is our situation.
If any of the medical people on the forum, have any corrections, please offer them. The whole issue of what each PC company actually offers is still being worked out, apparently, as PC is with at least one PC company still a "pilot program."
I've also been told by an RN that there are still a lot of details to be worked out to qualify as a PC provider, and that nurses have to be specifically certified to provide palliative care.
Hope this helps.
The reason I ask is....we made the decision (me, Mom, and her renal team) to switch her from peritoneal dialysis to hemodialysis last spring. She was not managing well at home anymore. They decided to go through her arm. She did TERRIBLY for such a long time....honestly, I thought she was going to die! And so did she, and honestly, I think so did the renal team. There was talk about ending dialysis and moving mom to palliative care. There was one more thing to try though. I made the decision for mom (she was very badly off) - that she have a catheter inserted just below her collarbone and try dialysis that way. The veins and arteries are supposed to be thicker, less prone to collapse, and they're closer to her heart and kidneys. The procedure was done less than a month ago (Oct. 18 I think) and Mom has already improved a great deal. Like, it's still not perfect, but she's not throwing up, she still sleeps a lot but not near as much, she has less pain, and her mind is more clear. She's started reading light magazines again and finally feels ready for a hair appointment for the first time in a year. She's even started to do small things around the apartment again, like empty her bedroom/bathroom trash, bring her own dirty dishes back to the kitchen, etc. (Small things, but things she couldn't manage before.) She's definitely not as sick as she was.
Just putting it out there, in case your mom is doing it through the arm....
I've encountered advance marketers who glibly lie, nonmedical people making so-called ADL assessments, offensive contracts, the worst being a so-called privacy policy which abuses HIPAA intents and creates for the company the right to use protected health information for marketing and fundraising purposes.
With PC, I would get a company that does have to conform to Medicare standards. That's not the case with private duty.
When I started my career as an RN, I was a Hospice nurse.
All Hospice patients receive palliative care, not all Palliative care patients are Hospice patients.
Let me explain. Hospice patients generally are required to have a terminal illness and to be in the end stages of it (the 6 month guideline is still generally accepted but it is not a hard and fast rule because no one can accurately predict this consistently).
Hospice seeks to help the patient and family to make the most of the life remaining. This generally means that symptoms and supportive care are prioritized over seeking a cure. For instance, for a cancer patient, chemotherapy would usually be stopped since the goal is no longer to seek a cure at all costs.
However, if the cancer patient has asthma, breathing treatments would still be provided for comfort. Hospice is also a wholistic approach at it's best with supportive services for the family members.
Palliative Care can start at any stage of an illness (as opposed to the end stages) and addresses symptom relief. If pain is an issue then a pain expert should be consulted, etc. Palliative care is a medical specialty that can be used while intensive treatments are still being given and is not just for terminally ill patients. It can be for a patient with severe COPD (emphysema) who needs symptom relief around loss of appetite and shortness of breath.
Many Hospice providers will allow dialysis because stopping it can be very uncomfortable. So being on dialysis and being a Hospice patient may not be incompatible. I would encourage you to have the consultation. IF you do not like the one Hospice provider, you can seek another if your insurance will allow it.
Regarding the dialysis question:
Generally the access for dialysis that is near the neck is a temporary measure. It is done in order to institute dialysis quickly. The fistula in the arm is more standard for long-term dialysis. Frequently, patients first get the access in the neck or upper chest then have the operation to make the fistula in the arm. The fistula needs time to heal before it can be used, so the neck/chest access is used until the fistula is ready. The reason the fistula is preferred for long-term dialysis is that it is less prone to cause infection. Having a catheter going through your skin in the chest or neck can be a highway for bacteria to enter the body.
Best of luck to you during this stressful time.
Margaret
So while the therapy (if ordered) might not be as frequent, it would be longer (if progress is achieved). For me, this is an advantage. When we've had home care post rehab, we've always known that it will literally be a whirlwind activity for a month or so, then nothing. There's both a relief and downside to that.
The relief is that someone can get back to the daily routine, and not have to tailor his/her schedule to that of the therapists, but the downside is that self motivation then needs to kick in to maintain home PT and OT. And there's no nurse, so that means trips to doctors, not so pleasant in our soon to arrive Michigan winter.
Hospice programs far outnumber palliative care programs. Generally, once enrolled through a referral from the primary care physician, a patient’s hospice care program, which is overseen by a team of hospice professionals, is administered in the home. Hospice often relies upon the family caregiver, as well as a visiting hospice nurse. While hospice can provide round-the-clock care in a nursing home, a specially equipped hospice facility, or, on occasion, in a hospital, this is not the norm."
"Palliative Care
Palliative care teams are made up of doctors, nurses, and other professional medical caregivers, often at the facility where a patient will first receive treatment. These individuals will administer or oversee most of the ongoing comfort-care patients receive. While palliative care can be administered in the home, it is most common to receive palliative care in an institution such as a hospital, extended care facility, or nursing home that is associated with a palliative care team"