Why Can't She Stay Here? Getting Kicked Out of Inpatient Hospice

[SopranoKris, MSN, RN, NP]

I am an ICU nurse and we come across this fairly regularly. A patient will be stable enough that they no longer require ICU care, but the family will refuse to have them transported home or to a hospice/nursing home. If it appears the pt only has a short period of time left, we try to do our best to have them transferred to another floor in the hospital. It depends on census. We've had our fair share of hospice/comfort care pts on our unit. Typically reserved for those who will expire less than 24 hours after life support is removed.

On a personal note, we went through hospice with 3 family members. One went to a hospice facility. It was a wonderful place. Looked like a ski lodge, they had a chef who would cook whatever our family member wanted, lots of wildlife to view through the large glass windows. The staff was wonderful and they made our loved one's last 2 weeks a great one. We were able to bring the dog each day and take him outside. His last day, he asked for a chocolate cupcake and a glass of milk. The nurse brought him the cupcake and he was smiling and remarked how good it tasted. While she was getting the glass of milk, he passed away. Even though it's hard losing a member of the family, we had such a positive experience with the hospice. The daily rate was pretty expensive, but it was money well-spent.

Our other family member was in the ICU for 7 days and then transferred to another floor for in-patient hospice, as we didn't have time to transfer her to an outside hospice. We had a very compassionate palliative care team. Definitely a different experience because she was never able to become alert enough to speak to anyone and passed away in a short period of time after leaving the ICU.

The 3rd family member had home hospice, as this was indicated in his advanced directive. We took turns taking care of him so no one person would be over-burdened with care & trying to work. His was the longest of the time spent in hospice care (nearly 3 months). He was able to be surrounded by his wife, children & (adult) grandchildren on the day he passed. We were able to take some video of him speaking to each grandchild & great-grandchild. He was a wonderful harmonica player and he mustered up enough energy to play a tune on it 3 days before he died. We will always treasure those memories.

Of the 3 experiences we had with hospice, my choice would be the hospice facility. While the cost was high, it sure was worth every penny. He remarked several times that he felt like they gave him his dignity back after being the hospital so long. My 2nd choice would be home hospice. If you have enough willing & able family members, it was calming to him to be in familiar surroundings, at home, where he wished to be. Obviously, not every family is able to choose this option, but if they are, it's actually a better experience than remaining in the hospital in-patient setting. I say this because, while the care was terrific, it was a noisy environment. It felt like someone was always coming in to the room, instead of just having peace & quiet.

As far as making transitions easier for the family, I think the best thing to do is highlight the benefits of hospice outside the hospital setting. Being cared for by actual hospice staff (whether at home or a facility) is a much different experience than floor nurses fulfilling that role. I was impressed by the level of care, compassion, gentleness and expertise the hospice staff had. While the floor nurses were great, you could tell they don't do comfort care often and sometimes the interactions were a bit awkward. (It's hard to know the right thing to say to a family sometimes!)

Just my (long-winded) 2 cents :)

[jeastridge, BSN, RN]

Dear Kris, Thank you for sharing your wonderful and personal perspective! The fact that you have had all three experiences makes your perspective unique and particularly well informed. I encourage you to add an intro and a conclusion and submit this as an article so that lots of others can read it! Have a blessed day. Joy

[traumaRUs, MSN, APRN]

Thanks for the article.

My only personal experience with hospice was with my father who was in asst living and we had home hospice. He was able to make the decision to not proceed with more invasive care, decided to stop all treatment and died peacefully 7 days later.

[nutella, MSN, RN]

As a palliative nurse in the hospital setting, I deal with the emotional and other fall-out of a terminal illness constantly. I also worked in the community.

I could probably write a book about this topic as there is so much to consider, think about and such.

My suggestions are:

1. Upstream work - meaning when a patient is dx with a terminal illness or chooses to forgo treatment, there should be a referral in the community asap to a palliative care consult or meeting with a hospice liaison with the goal of looking at a plan. Even though the patient might be "still ok" it is important to start planning. That means advanced care planning and also financial planning. Perhaps the patient needs to see an elder lawyer, perhaps they need to apply for medicaid, perhaps the kids need to plan and save time so they can take time off when the time comes. This is the part that is hardest to realize because there is not real good set up in most communities and patients may be reluctant to plan ahead.

2. Be honest and put out all information up front.

This is the biggest thing in my opinion.

Nowadays, nobody can die in an acute care hospital, unless death is imminent. If the person has more than 2 days left, we want to transfer them out. Sometimes it is not possible due to weird circumstances but in most cases, we are pretty accurate in estimating imminence of death.

Now comes the hardest part and that is why you end up with the fall-out in the hospice house:

Families are highly emotional and often angry at that time.

Once a patient/family considers comfort measures only, we have to sit down and talk about what that means in terms of care plan but also what comes next. It is very important to be honest and to say that if CMO is initiated, the work in the acute care setting is done and we help the family to make a plan to transfer out. I explain the three options (home hospice, hospice in the nursing home, hospice in the hospice house), sometimes a person would like hospice in assisted living (which would be the fourth option) and I also talk about the financial piece.

It is vital for everybody to understand that if there is no medicaid in place that covers longterm care or an insurance that will pay, that medicare does not pay for longterm care. I talk to them about the "room and board" and down spending.

That is usually when they ask about the hospice house. And I explain up front what GIP really means and that it is a pay by day decision - that it can also generate costs because patients are not always GIP level and if they are routine for some days, it will create costs.

When I talk about home hospice, I point out that the family needs to provide 24/7 care and the patient can't be left alone.

It is important to be up front and understanding but also firm. And everybody has to give the same information.

Those are hard discussions because the families who do not want to pay are often angry - home hospice is "free" though and if they feel that they can not provide 24/7 care at home that is their choice.

All of this should be pointed out with the CMO discussion especially when it is clear that the patient is not imminent.

A different story is when we know that the patient most likely has more than 24 - 48 h. Still, I never promise anything. I will say that usually once symptoms are managed and the patient appears stable and "has more time left" we will work on a discharge plan. However, if I feel that this is highly unlikely to happen - terminal extubation, taking off bipap/highflow, clear signs of imminence, I will also point out that this is highly unlikely and we will see how things go and to prepare that there is probably not much time left.

The bigger struggle is to ensure that the overall plan and goals for care are clear.

Sometimes case managers have a hard time with those discussions and revert to a plan that makes less sense and will result in the patient not receiving the care they want or need. If the patient would like to be comfortable and taken care off with a terminal illness, but the case manager suggest "rehab" so that "he can get stronger before going home" - this plan fails easily. Especially when the patient is already symptomatic with SOB/pain/ other and has very limited capacity for "rehab". Even if the case manager and family talked about "some days of rehab" and "go home" - chances are the patient is unable to participate and gets symptomatic , which means the rehab facility will send back to the ER. And we are back at square one because the plan was really not good.

Also, if the patient is at rehab and wants to go home with hospice after, it is essential that the hospice liaison comes out before the patient is D/C to meet with the family and patient to talk about the plan and set up for hospice. Otherwise, rehab discharges and often enough, the patient is back after staying at home for less than 24 hours.

When the family and patient want hospice it is usually not a good plan to go to "rehab" first - there are few exemptions. If the patient has a Medicare Preferred plan (managed medicare), that case manager will sometimes have the patient go to a skilled facility for a few days if there is a problem to set up hospice right away - for example if the family member has to work 2 more days before a family leave, or the room is not set up , or there are long holidays and hospice can not admit the patient asap. The difference is that the Medicare Preferred CM will work on a firm plan with the family and facility - the main point here is the communication piece. If I see a patient who has such an insurance, I call the CM from the doctor's office and discuss a plan, once we agree I connect that CM with the hospital CM to carry out the plan.

Whatever plan is made in the hospital - people need to put out all the information. Yes, I get a lot of anger (which is often just an outlet for the other emotions and stuff that is going on - grief, sadness, disbelieve...) but I also hear that families are glad I talked about everything up front and that there no surprises afterwards. It is important to guide families through the process and outline what is going to happen once a CMO decision is made.

Such a plan can look like this:

First the doctor will put orders in place to ensure the patient is comfortable and does the POLST.

Then we work on managing any symptoms that are distressing, we also will call the chaplain (if the patient /family would like support).

Because your loved one most likely has some more time left that he/she can spend with the comfort of hospice care, we will refer to the ...agency who will come out and evaluate your loved one for the hospice house. If they evaluate and you and the agency agree on that plan, we will put everything in place to transfer. If they come out and you do not wish to go forward with the hospice house, but wish the nursing home option with hospice, we will ask you to pick at least three facilities from this list and we will ask them for a bed, at the same time we will let the hospice agency know that this is the plan so they know (sometimes the hospice house agency also offers hospice in the home or nursing home - in that case it is a one stop shopping place).

Once there is a bed offer and you want to accept it, if there is private pay the nursing home will ask you to pay at least 2 weeks up front, they will contact you, please know that you have to be prepared to write a check at that time.

If you want to see the facility first, you can tour the facility.

Once everything is set up, we will organize the ambulance ride.

It is very important to be clear on everything. If somebody decides for the hospice house, I will always point out that if it turns out that symptoms are controlled and there is "more time left" that they will also work with the family and patient on another plan like home hospice or nursing home.

All of the above is written with Medicare in mind.

Commercial insurances and federal blue cross blue shield etc may have different rules. If the patient is 40 y old and was working prior to illness with a commercial insurance and now after going through cancer treatment is terminally ill or has a sudden event and moving towards end-of-life, the commercial insurance may pay differently for the hospice house. The only way of knowing in those cases is to refer and have them evaluate the patient, run the insurance and call for a pre-approval.

There are patients where I know the first time I am seeing them in the hospital that they are not doing well but they are not ready to focus on their comfort and they do not wish hospice. They often chose an approach where they can continue all treatment options but also start some palliative measures and may continue to see a palliative care provider in addition to help with advanced care planning/symptom control etc.

Typically, those patients start to circle at some point between hospital, rehab, and home - with the time at home or rehab very short and more time in the hospital. A typical example is the patient with end-stage COPD and CHF who now perhaps has something else as well like lung cancer or worsening dementia.

Those are the patients who often decided to seek aggressive treatments in hope to extent their life span and they are willing to go through a lot in order to get there (including ICU, intubations and so on and forth) plus they often hope that a new treatment comes along next week that will "turn everything around".

Those are also the patients who often live more in the hospital at some point than anywhere else and are resistant to discuss end-of-life with their providers. For those patients, it is typically the family who will have to make decisions one day when they are not able to recover anymore, can't come off the ventilator, are in the ICU on drips and maxed out treatments or when they have a sudden event and now are unconscious. While I would like to talk with them about their goals for care I can't if they do not wish to do so. In that case, the only thing I ask them to do is to fill out the HCP form and if they think that they are "low income" to have the family help them apply for Medicaid / get an elder lawyer. I tell them that this is to help the family and patient to prepare in case "things do not go well".

[jeastridge, BSN, RN]

Dear "Nutella,"

Thank you for your thorough reaction/reflection on the article. I so appreciate your suggestions and input because they clearly come from someone with experience and also with a compassionate heart. As you point out, it is so important to inform everyone involved but this is easier said than done, with all the emotions involved. Often, I find my patients and their families to be set on overload --the glazed expression betrays their lack of ability to absorb info--and so our best efforts to involve them become difficult. But you provide some solid approaches to dealing with the difficult GIP vs. "home" transition. Thank you again. Joy

[LadysSolo]

I have also experienced this on two fronts - My mom died of Alzheimer's disease in Hospice care in a regular nursing home, and I worked in oncology for 23 years. My mom had been clear when she was younger about "no aggressive care," so as she worsened, hospice was a natural progression. In oncology, most patients and families had time to process, but often families did not WANT to believe another "new" treatment would not be found, but the worst was when someone from out of the area would suddenly arrive after years away and then want "everything" done after the rest of the family had come to agreement. We often found that the financial areas were the biggest stumbling block, followed by one family member being saddled with the lion's share of the care.

[.4**]

This is an issue that will never go away. No matter how many times it is explained at admission people believe we make the rules. As cold as it sounds you can't always get what you want.

[manager123]

My experience is on two fronts. . . caregiver and family member/caregiver. Families struggle with the fear of the unknown. Concerns about the ability to provide the care needed (after all they are in a hospital now) and the lack of funding for private pay nursing or aid staff. Those seem to be the biggest issues I see from a caregiver perspective of families. For many, there are few additional family members to rotate care with and not working is truly not an option for many to provide in home care. SNF payments are poorly understood, especially in times of exhaustion and crisis.

My father (many years ago) was in a SNF and had terminal cancer. The way the social worker there presented the hospice option was not good and seemed that he would not have care needed from the staff in the SNF. We turned it down. It was early in the understanding of the role of hospice and just poorly presented.

My mother was moved to hospice care. It was a huge relief to know that she could return to her assisted living/dementia apartment. The burden of trying to find yet another place was overwhelming and I shed tears of joy when the staff said, "no problem, bring her home". She was expected to live a few weeks at most. She lived for 9 months and lived well. Returned to her normal functional state and enjoyed life. She did not know her diagnosis but enjoyed the music therapy, spiritual support and all of the other aspects of excellent hospice care. When it became apparent that the cancer was moving fast, we coordinated medication administration around the clock with me, another family member and hospice. The assisted living staff were not allowed to crush and administer meds sublingually as they were med techs and it was outside their scope. Hospice nurses came out rapidly for any concern and medications were adjusted for comfort. We were with her when she died. It was an excellent experience in caring from her staff in hospice and the assisted living staff.

We do not have hospice only facilities in my area. That is not an option for our families.

My editorial rant: I do wish that the commercials on TV about "we promised to keep mom/dad at home" didn't play. It brings tremendous guilt for those loving families that do not have the resources or ability to continue the level of care their loved one might need. Rather, the discussion should be "We will do our best to keep you home when it is safe and caring to do so, recognizing that there might be a time we can't provide the care to keep you comfortable or safe and we will need to look at other options". The guilt of family members who must place their loved one in a SNF for their final days/weeks is a burden they don't need at this time and they didn't "fail" as they often believe.

[.4**]

For Veterans there is an option called the Veterans Foster Home Program and the VA contributes 1788.00 per month to assist. Unfortunately as a former Hospice Nurse I witnessed the suckiest pardon the word) Hospice Organization I have ever seen. They are located in Orlando FL. And are called Cornerstone. I was invited to a free luncheon at a reputable facilty but when I was told Cornerstone was sponsoring it I refused.

[jeastridge, BSN, RN]

Hi LadysSolo, As you so well said, there are no easy answers. Each case is different. The only common thread in all cases is the help of advance planning and conversations before the fact. That and financial planning when possible. Thank you for you input! Joy

[jeastridge, BSN, RN]

Dear David, Unfortunately, there are some pretty poor hospices out there. It is hard for us who are doing it right and doing it well to be lumped into the same category. All we can do is keep on stepping up to the highest possible standards, doing an excellent job every day. Thank you for your response. Joy