How does hospice work with MC and MC services?

(Part 1 of comment)

It is very good that you are planning in advance for this possible need. Choosing a hospice provider is decision that requires almost as much effort as choosing a facility.

My DH is in an ALF with enhanced services and has been in hospice care for over 13 months. He has Stage 7 ALZ, congestive heart failure, effects from a stroke, and a chronic Foley catheter. This ALF also has a MC unit, and a number of residents there are also in hospice care.

First of all, acceptance of hospice and aging-in-place varies from facility to facility. When you are interviewing possible MCFs find out very specifically what they will and will not accept as far as the level of care the PWD may require as they progress physically, especially if they have other co-morbidities. Many facilities draw the line when the resident becomes a 2-person transfer assist, for example. When you discuss fees, be sure to find out the fee scale for additional services provided by the facility. I pay $2,400/mo. over the base room rate for DH's care since he is at the top level of services (Hoyer lift, special needs dining room w/hand feeding, catheter, incontinence, medication management, etc.) His physical problems are worse than his level of cognitive decline so he does not require the locked-unit MCF. Were he not in hospice care, by state regulations he would have to be in a skilled nursing facility (at twice the cost).

Hospice care is paid for by Medicare or by private insurance (check your policy). The general Medicare guideline is having a terminal disease with a general prognosis of less than 6 months to live. Qualifying for hospice care based on a dementia diagnosis is different from qualification for other terminal diseases and does NOT mean the patient will die within six months. Recertification is done at certain intervals.

You may contact as many hospice providers as you wish, though facilities often have a preferred provider list. Although these preferred providers are already contracted to be in the particular facility, a 1-patient contract can usually be issued if you want a provider who isn't already contracted. The best way to find a good provider is to ask family member of other residents. Facility med techs work with all of the providers in the building and usually know who has a good reputation for patient care.

A hospice nurse conducts the evaluation of the patient to determine eligibility and recertifications. The initial evaluation will include reviewing with the family the patient's current medications and supplements. Do not be surprised if the recommendation is made to discontinue most of these, as the focus is changing from curative to comfort care. Providing the patient's medical history, including the dementia diagnosis, is important, especially if the patient has no other comorbidities. The hospice agency will let you know what they need. If a patient is on the cusp of qualifying and is turned down by one agency, try another. Some are better at finessing the finer points of qualification.

Once accepted into hospice, a care planning meeting is then held with the hospice representative, a facility representative, and the family. This is to ensure that everyone is on the same page and has a clear understanding of the care plan going forward.

The interaction between facility care and hospice care at DH's facility is a coordinated effort. The particular hospice agency we are using enjoys a very good relationship with the facility management, making things much easier. Communication between the hospice personnel, facility staff, and the family is vital.

DH's hospice nurse (a RN) sees him once or twice a week to check his vitals, monitor for pressure sores, and check the progression of his general decline. He has CHF, and she monitors his edema. The nurse also changes his Foley catheter. On-call nurses are available 24/7/365 as needed, and in our case, the facility initiates the call. Per my request, it is written in DH's hospice care chart that any on-call nurse is to call me if they see DH, since he would not remember being seen and can't communicate. DH's DNR and living will are on file with both the facility and hospice, and there is a clear understanding that he is not to be transported to a hospital. The hospice RN consults with the hospice medical director (a M.D.) who advises the course of treatment and prescribes medications as needed for comfort. This has included antibiotics for UTIs and aspiration pneumonia, diuretics for edema, skin cremes to prevent diaper rash and treat pressure sores, and thickener for liquids, besides certain basic every day medications. My mother's (in a MCF with hospice care) medications include Seroquel and an antidepressant to help with her paranoia, delusions, and hallucinations and are considered comfort meds. Meds are provided through the pharmacy contracted with the facility, but are billed through hospice.

A hospice bath aide sees DH 2-3 times a week. Because there are a number of patients with this particular hospice agency in his facility, an additional hospice aide is usually available to assist as needed. When DH was still ambulatory, though a 2-person transfer, the aides would give him a wet shower. Since becoming unable to stand at all, he is given bed baths. She shaves him and cuts his hair as needed, and performs other basic hygiene tasks. She is a CNA and also monitors his condition, alerting the RN to any changes or concerns.

The facility staff handles DH's needs most of the time. They are trained to use his Hoyer lift to transfer him from bed to Broda chair and back. They prepare his thickened liquids and handfeed his meals. The facility kitchen prepared puréed meals until recently and now supplies comfort food. These food requirements were prescribed by the hospice MD, as was a medical order that he be put in bed every afternoon to prevent pressure sores from sitting in the Broda too long. The facility med techs administer his medications and are responsible for alerting hospice when refill prescriptions are needed.

Hospice supplies DH's DME: Hoyer lift and slings, hospital bed, Broda chair w/wheelchair pad, over-the-bed table, oxygen (currently in his room for possible future use), shower chair (when he still could wet shower). Wheelchairs were supplied in progression as he advanced from a standard chair to a high-back chair to the Broda. They also supply briefs (diapers), disposable bed pads, Foley catheter supplies, skin and hair toiletries and all medications deemed for comfort. Should it become necessary, when the time comes they will supply the pain pack to keep him as comfortable as possible until the very end.

As a patient progresses closer to death, the frequency of visits by a hospice nurse increases. Because DH's facility is not a skilled nursing facility, by state regulation facility staff are not allowed to administer narcotics, but a hospice RN will come as needed to administer the medications. Hospice does not provide someone to be with the patient 24/7, though.

The above comments are spot on. My DW is in a MCF and has been on hospice for several months. The hospice team is awesome and provide services in addition to those provided by the MCF. I can't speak for other places, but the MCF staff and hospice staff seem to coordinate and work well together for my wife. Hospice nurses have been a great source of information and guidance as I navigate this difficult time.

The main impetus behind my decision to initiate hospice care for my DH was 6 hospitalizations in 4-1/2 months. Enough is enough. As for getting your family members on board, education is the key. Many people do not know enough about hospice care and the palliative care philosophy and refuse to allow hospice care out of fear.

I would like to add for general information: A good hospice agency issues recommendations and must follow best practices, but allows the family the final word in treatment. They do not come in, start issuing orders and unilaterally take over, pushing the family to the side. The HCPOA (and by extension the entire family) are equal partners in the decision making process, but the HCPOA does have the final word if the family cannot agree. If you are dissatisfied with the hospice agency you choose and cannot work out the difficulties with them, you are free to change agencies at any time.