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

[jeastridge]

The elderly patient stared back at me with watery, vacant eyes while I leaned over to listen to her lungs and complete my assessment. Her lungs were clear and her heart rate remained steady and slow. She reached up to pull at her nasal cannula and her daughter quickly replaced it, saying, "Now, momma, leave that be. It's your oxygen. It's gonna help you."

I sat down near the bedside with the daughter and granddaughter and we talked about the patient's course: she had ongoing dementia and recently suffered a fall and a broken hip. After surgery, she had a stroke that affected her ability to swallow and the family was faithful to follow her wishes not to have a feeding tube. Because of some pain from her hip, and some restlessness, we had admitted her to inpatient hospice care for symptom management. Now, two days later, her pain was well controlled and the patient was resting comfortably with no further need for interventions that could only be provided in a hospital/hospice house setting-care often referred to as general inpatient care or GIP.

I talked with the family about what had happened over the previous two days: her pain was better. Yes, they agreed. And she was calmer and appeared more comfortable. Yes, they saw that, too. I also pointed out that while she continued to take the occasional bite of ice cream or applesauce, she was not able to take in enough calories to survive over the long term or to be able to go through rehabilitative care.

As gently as I could, I told the family she would need to be discharged to home or to a nursing home setting; either place, hospice would come and take care of her there. Although we had covered this thoroughly during the hospice admission process, it seemed to be new news to the family at this stressful time.

"What are you talking about? You can't make her go home! We can't take care of her! I have a bad back, and I can't pay caregivers. No! You cannot send her home." She crossed her arms and leaned back in the chair, her face set and angry.

I listened and made a conscious effort to open my hands, palms up, while working to keep my facial expression neutral. I asked her a few questions about the home situation, looking for clarification. She raised her voice and became more agitated. Her daughter, a young woman probably in her 20's, put her hand on her mother's arm, obviously trying to calm her down. The daughter got up and stormed out of the room. The daughter raised her eyebrows and shrugged as if to say, "What do you do about that?"

Hospice's goal is to primarily take care of people in the home. The team is set up so that the nurses, aids, social workers and chaplains, visit and care for patients in their familiar home setting. Sometimes the "home" is a nursing home or an assisted living or even a family member's home. Wherever "home" is, hospice will come to them there. The hospice services in and of themselves are almost always covered by insurance and they are covered 100% by Medicare. But the "home" itself, is private pay. So if the patient needs to be in a nursing home, hospice comes there to care for them, but they are responsible for the room and board at the facility.

While this makes good sense when we are cool and rational, it can come as the final straw for an overwhelmed family who has used up all their emotional, physical and financial resources caring for a loved one who has been ill over a period of time. People generally don't understand or don't remember that this is the place where those who can afford it employ long term care insurance. For others, it can be a time of real financial hardship, taking the last of meager resources. For those who are indigent, Medicaid will often be involved in helping cover the nursing home expenses.

During these tense times, the questions can come fast and furious

• "What do you mean you don't pay for the nursing home?"
• "What do you mean my loved one has to go home?"
• "What do you mean she is stable? She is dying!"

In hospice, our job is to listen, to be able to show some empathy and to help the family come to the best solution for them.

I left the room to allow the family some time and space. After discussing the situation with my managers, I waited until a social worker arrived and we went back in to talk with the family again. After more conversation, we were able to reach a solution that seemed to help the family with what they needed the most: time and rest. We kept the patient in the hospital for a few days of respite, allowing the family time to process, recovery physically, and make arrangements to care for her well at home with a rotation of extended family members.

By the end of the day, there were hugs and comforting words all around as the family resolved to go home for a bit and get some "real sleep," but most importantly, the patient was resting, comfortable and appearing to be at peace.

What has been your experience with GIP/respite/home care and the interface between these three? Do you have any insights on how to make these transitions easier for everyone?

[Gizmopup1]

I have worked in Hospice for many years in many roles. I have seen situations like this story so frequently and also feel there is huge room for improvement. There are several ways we can improve and prevent stories like this from happening.

We need to have honest, open dialogues about end-of-life care and caregiver needs BEFORE family members actually start to decline. This means we need to start writing to Reader's Digest, AARP, and other visible sources read by the public and start bringing up the topics of How much does caregiving cost?” How will we afford care for Mom/Dad?” Who will care for Mom/Dad 24/7 should paid caregiving not be an option?” Hospitals could even hold monthly workshops on the topic and cover important questions like What is involved with caregiving?” How much is intermittent paid caregiving?” and What does outpatient Hospice offer and cover?” We offer this for new parents, why not families of the elderly?

I would love to see more families having open conversations about decline and what the plan will be when someone does decline and need constant care.

I agree with the previous posted who mentioned media portrayals of aging and death. It seems like when we do portray death, it is rare, fast and clean. And that there are way more portrayals of miracle cures and success stories than honest portrayals of dying.

I think if more families had a chance to prepare, end of life could be less traumatic.

[jeastridge, BSN, RN]

I have worked in Hospice for many years in many roles. I have seen situations like this story so frequently and also feel there is huge room for improvement. There are several ways we can improve and prevent stories like this from happening.

We need to have honest, open dialogues about end-of-life care and caregiver needs BEFORE family members actually start to decline. This means we need to start writing to Reader's Digest, AARP, and other visible sources read by the public and start bringing up the topics of How much does caregiving cost?” How will we afford care for Mom/Dad?” Who will care for Mom/Dad 24/7 should paid caregiving not be an option?” Hospitals could even hold monthly workshops on the topic and cover important questions like What is involved with caregiving?” How much is intermittent paid caregiving?” and What does outpatient Hospice offer and cover?” We offer this for new parents, why not families of the elderly?

I would love to see more families having open conversations about decline and what the plan will be when someone does decline and need constant care.

I agree with the previous posted who mentioned media portrayals of aging and death. It seems like when we do portray death, it is rare, fast and clean. And that there are way more portrayals of miracle cures and success stories than honest portrayals of dying.

I think if more families had a chance to prepare, end of life could be less traumatic.

You offer some concrete and helpful suggestions of ways to address the problem. Thank you! As a Parish Nurse, I do have opportunities to talk about these issues with people in my congregation but you inspire me to hold events to discuss eldercare! Great ideas. Joy

[llg, PhD, RN]

My experience with hospice care was with my mother who died of pulmonary fibrosis. They were very nice people and offered great services ... but we didn't get much benefit for a couple of reasons:

1. And this is the big one: Even though she herself knew that death was approaching, her doctor couldn't admit it. Whenever she or we would ask about such services, he would say it was "too soon to be thinking about that." So even though her insurance would pay for 3 months of hospice care, she only got 2 weeks. It makes me angry to think how easier things might have been for her and my step-father had they been given access to the service sooner.

2. All providers (including the home health people and later, the hospice people) kept worrying about the cost of every little thing. Money was not a problem. We had plenty. But they kept saying things like, "Medicare might not cover that." We kept saying that we didn't care what Medicare covered -- we were willing to pay cash, up-front, for anything that help might help her be more comfortable. Having to "fight" for everything -- combined with the fact that her doctor refused to believe she was going downhill as fast as she and we were all saying -- meant that every service she received came 2 or 3 weeks later than she needed them -- hospice being one of the things she needed sooner than she got it.

And my parents had done "everything right" in terms of planning -- finances, paperwork, living in a facility that could provide a lot of services, etc. We just couldn't get the doctor and a few key home health people to initiate all that stuff that was available until the last minute.

But for the family in the original post ... and others like them ... I am a strong believer in talking and teaching about these things long before they are needed -- years before, not waiting until an event triggers the final "hospitalization."

[jeastridge, BSN, RN]

My experience with hospice care was with my mother who died of pulmonary fibrosis. They were very nice people and offered great services ... but we didn't get much benefit for a couple of reasons:

1. And this is the big one: Even though she herself knew that death was approaching, her doctor couldn't admit it. Whenever she or we would ask about such services, he would say it was "too soon to be thinking about that." So even though her insurance would pay for 3 months of hospice care, she only got 2 weeks. It makes me angry to think how easier things might have been for her and my step-father had they been given access to the service sooner.

2. All providers (including the home health people and later, the hospice people) kept worrying about the cost of every little thing. Money was not a problem. We had plenty. But they kept saying things like, "Medicare might not cover that." We kept saying that we didn't care what Medicare covered -- we were willing to pay cash, up-front, for anything that help might help her be more comfortable. Having to "fight" for everything -- combined with the fact that her doctor refused to believe she was going downhill as fast as she and we were all saying -- meant that every service she received came 2 or 3 weeks later than she needed them -- hospice being one of the things she needed sooner than she got it.

And my parents had done "everything right" in terms of planning -- finances, paperwork, living in a facility that could provide a lot of services, etc. We just couldn't get the doctor and a few key home health people to initiate all that stuff that was available until the last minute.

But for the family in the original post ... and others like them ... I am a strong believer in talking and teaching about these things long before they are needed -- years before, not waiting until an event triggers the final "hospitalization."

I am sorry for your loss and I am sorry that your experience with hospice was "too little too late..." Thank you for sharing from your own experience. As you point out, many physicians are focused on extending life and feel they may be failing their patient if they call hospice. Although this is a human, natural response, it can certainly be hard on the family. I hope that over time, through education, this will shift to a more "wholistic" vision of the dying process.

[AbstracRN, BSN, CNA, RN]

I see this often as an aide, they take it so personally. I tell them that there is duality in this situation, on one hand they have gotten better,on the opposite side if they were allowed to stay they are actively declining and may have a few weeks of living left. I had a patient like this two months ago she was such a sweetie, she felt like she was being kicked out in the streets.

[jeastridge, BSN, RN]

I see this often as an aide, they take it so personally. I tell them that there is duality in this situation, on one hand they have gotten better,on the opposite side if they were allowed to stay they are actively declining and may have a few weeks of living left. I had a patient like this two months ago she was such a sweetie, she felt like she was being kicked out in the streets.

Thank you for your comment. You make a good point. So often we see the negative side and can't see a "Third Way." For hospice, sometimes it means having a short "respite" stay inpatient so that the family can rest and be supported and after that, making a decision about which way to go for end of life care.

[Not_A_Hat_Person, RN]

My mother was a hoarder. When she was no longer able to care for herself, home hospice refused to service her because her apartment was in such bad shape. The local inpatient hospice wanted $300 per day for room and board, money we didn't have. She ended up dying in a nursing home about 10 days later. I think Medicare paid for it, since they will pay for the first 30 days of a nursing home stay.

[jpeak]

(I posted this comment to the wrong thread yesterday. Will try again. Thank you.)

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

I work in a free-standing hospice inpatient unit. We provide respite, general inpatient, and residential levels of care.

I just finished an independent study module on Ethics of Family Communication. It talked about when fear is an emotion, our thinking reverts to flight, fight or freeze. Full cognitive ability is not utilized to process information. Many times our families of hospice patients experience that. Fear that their loved one is actively dying. Fear of a new diagnosis that has limited days. Fear of having to provide care that they don't know how to do. Fear of making things worse and not comforting.

I like your approach of open hands, open mind, open heart and open questions. Helping the families to acknowledge their fears can release that flight, fight or freeze response and open the "hearing" to information presented.

I always hesitate to tell families of inpatient hospice patients "they will go home when they are better". In the families understanding...they will never be better...their loved one has a hospice diagnosis. I try to stress "when symptoms are under control" and then define what that looks like. Even then they may be in the fear-thinking mode and not understand me. Gentleness, time, and reinforcement then becomes the focus. Reviewing the written information given at admission also helps the family to see in black and white what those guidelines for inpatient level of care are and supports that we are not just making things up as we go or trying to make things difficult for them.

How to reduce the fear of caregiving? Gentle demonstration of care elements. Little tips of turning, bed changing, or feeding. We as nurses may have been doing these things for years and it is second nature to us. The families need that instruction to develop confidence in their ability to provide compassionate care. In the end...that family may be so proud of what they were able to do for their loved one in the home environment. Fears relieved.

Thank you for addressing this difficult issue.

[jeastridge, BSN, RN]

(I posted this comment to the wrong thread yesterday. Will try again. Thank you.)

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

I work in a free-standing hospice inpatient unit. We provide respite, general inpatient, and residential levels of care.

I just finished an independent study module on Ethics of Family Communication. It talked about when fear is an emotion, our thinking reverts to flight, fight or freeze. Full cognitive ability is not utilized to process information. Many times our families of hospice patients experience that. Fear that their loved one is actively dying. Fear of a new diagnosis that has limited days. Fear of having to provide care that they don't know how to do. Fear of making things worse and not comforting.

I like your approach of open hands, open mind, open heart and open questions. Helping the families to acknowledge their fears can release that flight, fight or freeze response and open the "hearing" to information presented.

I always hesitate to tell families of inpatient hospice patients "they will go home when they are better". In the families understanding...they will never be better...their loved one has a hospice diagnosis. I try to stress "when symptoms are under control" and then define what that looks like. Even then they may be in the fear-thinking mode and not understand me. Gentleness, time, and reinforcement then becomes the focus. Reviewing the written information given at admission also helps the family to see in black and white what those guidelines for inpatient level of care are and supports that we are not just making things up as we go or trying to make things difficult for them.

How to reduce the fear of caregiving? Gentle demonstration of care elements. Little tips of turning, bed changing, or feeding. We as nurses may have been doing these things for years and it is second nature to us. The families need that instruction to develop confidence in their ability to provide compassionate care. In the end...that family may be so proud of what they were able to do for their loved one in the home environment. Fears relieved.

Thank you for addressing this difficult issue.

Dear jpeak, Your comments are appropriate right here! Thank you for sharing and for your kind response. Helping people learn to take care of their loved ones and helping to prepare them to go home is a special mission. And your suggested phrase "when symptoms are under control" is a great one to adopt. Gratefully, Joy

[StJohnRiver]

I work in an inpatient hospice unit in a hospital. We often get patients who come from ED or ICU and are there to be evaluated before a decision is made on where to place them. Saying the right things at the right times, and being consistent, is critical. Patients MUST be told before they come to the IPU that the unit is for short-term care only, and if a patient is stable, they will be sent to an appropriate place, hopefully back home, or to the nursing home where they had been living, or to a SNF. The problems arise when patients come to the IPU with the expectation that it is the long-term solution to their problem, that the patient has just found a new home. When they arrive, we determine if they have been given the correct information and understand the policy. If not, we make it clear that we do not do long-term care, and we provide a letter detailing this, and why, and what the cost may be if the family does not want the patient to leave the unit despite the consensus that the patient is not appropriate for further time in the unit. This is necessary because, as unfortunately is usually the case, a few families have tried to take advantage of the situation. They don't want the patient back home, for whatever reason, and don't want him or her in nursing home, and really, really like the idea of having them stay with us where they get really good care. We explain that Medicare will not reimburse us for patients that do not qualify for the higher level of service, and unless the patient is End Of Life or in a Crisis, they can't stay. We aren't kicking them out, we are putting them in the appropriate setting (that fits what Medicare will reimburse). Despite all that, some families will continue to kick and scream, but eventually, when faced with a bill of $525 per day, they will relent. I happen to agree with this, since our beds should be for those patients at EOL or actively dying who require the level of care we can provide.

[csiln]

I have not worked as an RN for 10 years but would like to return as an hospice nurse. Any thoughts?

[jeastridge, BSN, RN]

I have not worked as an RN for 10 years but would like to return as an hospice nurse. Any thoughts?

It's hard to say without just a bit more information. But assuming you are current in your licensure and up to date on continuing education, etc., you might still want to consider a hospice setting where you will have lots of support and help getting started with a good mentor and a large team.