Can hospice step in if an Alzheimer's patient no longer wants to be hospitalized?

5 answers | Last updated: Sep 27, 2016
A fellow caregiver asked...

When the patient has many health issues besides Alzheimer's, but does not wish to be hospitalized any more can hospice step in even though there could be more than 6 months remaining?

Expert Answers

Audrey Wuerl, RN, BSN, PHN, is education coordinator for Hospice of San Joaquin in California. She is also a geriatric trainer for the End-of-Life Nursing Education Consortium (ELNEC), which promotes education in geriatric nursing and end-of-life care.

The Hospice Benefit requires that patients have a prognosis, or life expectancy, of 6 months or less as determined by their doctor. This is really an end-of-life benefit when cure is no longer an option and all therapies have been completed. Most patients with Alzheimer's disease will have other conditions that can shorten their life or actually be the cause of their death. We call these, co-morbities.

When we work with physicians whose patients have Alzheimer's, we use the Functional Assessment Scale to determine which stage the patient is at. At stage 7, there is a marked decrease in psychomotor skills such as walking, or even sitting up. Most will be bedbound. Difficulty with eating and swallowing safely can also be lost. This is why there may be a gradual (but continuous) weight loss. Language skills and the ability to communicate are often absent at this stage. Generally, the patient will have been institutionalized in a nursing home because the family cannot care for him/her in the home setting.

Sometimes, the Alzheimer's patient who is placed on hospice services lives longer then 6 months. The patient can remain on the hospice benefit as long as there is a continuous decline and the physician certifies that the prognosis is still 6 months or less (even though now it is longer). Keeping people in their own home, which could be a nursing home, is the intent of this type of care. I would encourage anyone to speak to their loved one's physician and learn if hospice services would be appropriate.

Community Answers

Jennyb answered...

The issue isn't whether you can refuse hospitalization -- which you can do without hospice intervention -- or whether you can opt for palliative care. It's how much of the tab Medicare will pick up.

Hospice is for those who are terminally ill and sick enough that they are expected to die within six months. Because they are expected to die, most hospice programs forego extensive life-prolonging treatments, so that hospice patients can concentrate on getting the most out of the time they have left, without the negative side-effects that life prolonging treatments can have. As Audrey notes, life expectancy can be difficult to predict in an Alzheimer's patient. Once the doctor agrees there are so many co-morbidities that life expectancy is thought to be 6 months or less, s/he will authorize hospice care. As long as the patient continues to need hospice treatment, the patient can continue to receive it. I have friends whose loved ones have been on hospice for more than three years. Medicare pays for hospice care, whether in the home or in a hospice facility. This care includes a lot of "extras" that Medicare would not usually cover -- incontinence supplies, medicines, chaplain, home health nursing visits, etc. That's why a doctor's authorization is needed.

OK, but what if the doctor feels your loved one has a longer life expectancy than that? How do you get "comfort care" for your loved one, supervised by a doctor, and avoid unnecessary and distressful hospitalizations?

Palliative care is appropriate for patients who have life-altering, but not necessarily life-threatening, disorders. It can be received by patients at any time, at any stage of illness whether the illness is terminal or not. Palliative care has the same focus on quality of life as hospice, but there is no expectation that life-prolonging therapies will be avoided -- the patient may choose the treatments s/he desires.

Some palliative care specialists see their more mobile patients in the office, and their less mobile at home. Some places offer a palliative care program that is like hospice, in that all of the care providers (nurse practitioner, nurse, chaplain, etc) come to your home. Palliative care is often provided by an organization that provides hospice care.

The big differences from hospice, then, are (a) you do not need to have anyone's authorization to choose palliative care, (b) the palliative care patient can opt for "curative" treatments at will, and (c) Medicare may not pick up the full tab.

My husband is being cared for by a certified geriatrician who is a palliative care / hospice care specialist. He sees her at her office (a senior healthcare center), and those visits are covered by Medicare, just like a "regular" doctor's. As his disease progresses, we will transition to at-home palliative care services, with the palliative care team supervised by the same doctor. I love her to pieces. She focuses on what's important for his quality of life. And both she and the rest of staff at the center really know how to work with Alzheimer's patients.

Wasillabound answered...

Thanks so much Audrey, my 89 yr old Mom has been in a skilled nursing facility (for 8 mos.) and has recently been accepted for additional hospice care (by a provider that visits the nursing home). As her daughter and POA I'm still getting my bearings on how to monitor and make sure this arrangement is working to her best interests. She is bed bound, has Type II diabetes with neuropathy, HBP and ventricular stenosis which I'm guessing are her "co-morbidities'" additionally within the last 10 mos. her dementia is escalating and she's also receiving anti-psychotic meds Seroquel(along with Namenda)on top of the plethora of meds for her above mentioned maladies. She takes in more pills daily than food; her communication has dwindled (except on her bad days when her agitation escalates to yelling). While hospice is providing additional care we've gotten off to a rocky start as I didn't realize it adds an additional layer of "bureaucracy". The nursing home charge nurse who tends to her daily is not the direct line to her visiting Dr., the hospice nurse is. Unfortunately they are going through some kind of staffing issues and we have not had the same nurse come in (weekly), communication is very poor ergo my Mom's evaluation and medication review has not happened in a timely fashion (it's been 6 wks). This is something I had not anticipated and hope to acheive better communication with this group. I realize I may have to cancel our contract with them and engage another group or contact our States Ombudsman's office (Medicaid is providing the coverage). These are things folks new to this process should be aware of, as negative as it is. If it weren't for the fact that I visit my Mom 6 evenings a week (I visit and feed her dinner after work M-F and lunch on Sat or Sun) I would not be aware of how lacking this group's communication is. Regardless, you clarified the what and how hospice came to be recommended as I feel it was "tip-toed around" by the physician. Your article has equipped me with the "verbiage" to use when I speak with him again so he knows not to use "kid gloves" with me and I'll be more direct in my communication with him. At the end of the day it's all about doing what we all can to make Mom's final days as comfortable and safe as possible.

Sallyc answered...

Another difference we discovered between palliative and hospice care involves regulations at an assisted living facility (this is Wisconsin, may be different elsewhere). My father has advanced Parkinson's and moved from a skilled nursing facility (where he was on "comfort care" and I had requested no hospital transport without my approval. They can do that because they have RNs on duty 24/7. In his new home, a CBRF (community based residential facility) that is a very high level of assisted living, if he did not qualify for hospice any medical problems encountered when only CNAs were on duty (night time) would require a call to 911. Fortunately he qualified for hospice, and now the facility can call the hospice team 24/7 with any concerns and he will not be sent by ambulance to the hospital. We are very pleased with the home like setting of the CBRF and the care he is receiving from them and from the hospice staff.

Uncle1 answered...

I am not going to respond in a manner that would indicate for a moment that I am an expert. However, this column needs one right now. Palliative Care and how one qualifies and what one can expect is not understood very well by all that many doctors so the referral it self may be somewhat offensive. Your family memeber may not even qualify! Secondly, Hospice is no longer just for the dying.It can move with your family member from his home to your home to assisted living and finally to any place the actual last moments (6 months or less)of your family members life. Again without being close to death some hospice services have facilities where the patient can go if that should become necessary to avoid sending him/her to a hospital that may make things worse but will most definitly not "know" your family member. The Hospice Team goal is to get them back on their feet and back home (where ever that may be). Again there are many doctors that do not understand the patient does not need to be dying but he is in greater need then a patient receiving Palliative Care. You can move from one program to the other as it becomes appropriate. Interestingly enough Medicare tends to pay a lot more for the additional care because they are avoiding the long stay at a hospital or possible rehabilitation center. I appreciated them both when I finally understood them and before I actually assaulted the doctor who made the rcommendation without having any idea what he was talking about or how to present these things appropriately.There ia a Palliative Care Representative at the hospital. When they come to meet with the family they will bring a Hospice Representative to help you decide the right one. Both have a team. Get the right information and keep an open mind!