Jerry's home health nurse practitioner just left. She immediately recognized in Jerry what I have suspected; she recommended palliative care. The nurse practitioner also said that hospice would also be appropriate, because she does not expect Jerry to live longer than another six months.
Jerry knows none of this and neither does his sister or his estranged daughter. Does anyone have experience with palliative care?
Since then it seems to have become a way of delivering cheap sub-standard care that is less about providing for the patient's needs and comfort and that is more a means of promoting and hastening rather than supporting the natural dying process.
As soon as someone is diagnosed with dementia, with cancer or following a stroke, members of a hospital's "palliative care" team swoop in and push the DNR agenda and promote hospice benefits. What they often fail to inform families about is that choosing hospice means giving up all personal control over treatment choices, etc. and that there can be extreme differences in how patients, families, and hospice agencies interpret "comfort care." At some agencies, "comfort care" means treating urinary tract infections to prevent fevers and delirium; other agencies, however, don't treat infections of any kind. Some agencies provide nutritional support (Ensure, Boost, etc.) and some don't--some restrict nutritional support to patients "who can't eat anything else at all."
My advice to families? Don't choose hospice unless death is but a few days away, and opt for in-patient brick-and-mortar hospice if you can. That way, there's a much better chance that your loved one will be fed and medicated for pain in a timely manner. Have enough family members available who can sit vigil at the bedside to watch and speak for the patient.
If the patient is indeed 'terminal' -- choose palliative care, because with palliative care you have more options. When the palliative care team at the hospital comes knocking, ask the palliative care nurse to tell you who he or she is employed by. Some palliative care professionals work for the hospital and some for outside agencies and some work double-duty (which I see as a conflict of interest, but that's another lengthy discussion worthy of a thread in itself!).
If instead you believe that hospice would be a good choice for you, enter the situation well-prepared! Demand to be provided a list of hospice agencies from which to choose from; that is your right under Medicare. Go visit a few agencies; interview the staff. Ask questions about their philosophy on end-of-life care, for example, do they treat infections? Read their contracts carefully! Obtain a contract that has specifics about what kinds of care is delivered! Do they promise nurse visits three times a week? Do they promise to provide 'light housekeeping'? Wound care supplies? If so, tell them that you want to see that IN WRITING! Don't accept a hospital discharge until YOU are satisfied that you have selected an agency that meets YOUR specifications -- not the hospital's or the palliative care team's. You can appeal a discharge to Medicare; the hospital must provide you with a document that has details on how to file an appeal. Don't allow social work or other hospital staff to frighten you into thinking that an appeal will fail or that you "might" have to pay for the in-patient days spent in the hospital during the time of the appeal.
A contract that specifies each of the services to be delivered is especially important if the patient resides in an assisted living facility or nursing home. It's so easy for hospice to shirk responsibility in those situations and for facility staff to expect hospice to deliver care that they might otherwise be responsible for. What happens too often in those situations is that the patient suffers repeated episodes of 'missed care' because it has not been made explicitly clear who is now responsible for what aspects of routine care. When hospice can't provide a service-specific contract, have hospice promises documented by the facility in the patient's personal nursing care plan.
Also, not all hospice agencies are the same! My relative went under hospice care for a month. What a JOKE that was! All of this particular hospice program's nurses lived in a city that is 35 miles away and never wanted to come at night if she needed them (she PF and CHF and was having panic attacks).
They dropped off a pain kit (morphine, Haldol, Tylenol suppositories) and made it pretty clear the family was expected to handle any administrating of these meds. She lived alone, did not have a sitter, and I lived 20 miles from her. This relative thought she wanted to be on hospice because she thought it meant someone would be coming to help her shower and do light housekeeping. NOPE. I seized upon this awful experience to convince her to go to AL, which she had strongly resisted for 2 years despite desperately needing to do so. She agreed to move and is thriving there. I'm 100% convinced she'd be long dead if she had stayed home and under this particular hospice program.