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?

[EDnurseNY]

With my mom, the only people that would've been around to care for her were me and my sister, and I had been caring for her for a while at that point. The arguments of "but there are hospice facilities! And SNFs! And home nurses! And respite care! How could you not want to take your mom home?! Suck it up! You're stronger than you think! I did it for my loved one, so can you!" frustrate me. There were no open beds in hospice facilities. Her insurance wouldn't pay for a SNF and she wasn't eligible for Medicaid. The home nurses could stop by only up to three times a week for a half hour each time just to check in and drop off meds. The "respite care" was two hours once a week, maximum, if we were lucky enough to have a worker available. The wound from the cancer eroding her skin/tissues evolved quickly and veins would pop, drenching her hospital bed in blood and would take every trick the nurses had to stop because bleeding out would've been a terrible way to die.

Thankfully, the doctors and nurses agreed that it was time for us to stop being her 24/7 home nurses and be her daughters again until she passed. We were able to keep her in the hospital to get the (comfort) care she needed. As a nurse (now), I hate it when those attitudes are taken toward families who are grieving and may lack support to take care of their loved ones. Family members should be family members at the end of life, and not end up resenting their ill loved one and feeling terrible about it after they die.

ETA: Don't get me wrong, I love the hospice philosophy and our nurses and hospice liaison were absolutely wonderful. I had also had plenty of time to come to terms with what was going on and had no unrealistic expectations about her outcomes. I didn't want her kept in the hospital, but we really had little choice.

[.4**]

Joy

That was directed at one Hospice Organization only. I worked for a wonderful one as does by daughter who works for one on the other side of the state. Sorry if it seemed otherwise. At 59 my Advanced Directives, Living Will, and ahealthcare Surrogate (my 27 year old RN BSN who next year will be an FNP) are all signed with Hospice as my choice.

[BeenThere2012, ASN, 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

Agree! Excellently written,very clear and informative.

[WoundcarePhilRN]

Sounds like it would have been better to DC the pt first before bringing in Hospice. In patient Hospice for 2 days? Makes no sense to admit someone for a few days, pain can be handled in any nursing environment. I work in an LTACH environment and see many terminally ill patients. I hate to see the system pushing patients out the door on their families. The low budget nursing homes in the area are terrible and have horrible ratings. We receive patients from them that have not been well cared for.

I see to many families making the choice, home or cheap lousy nursing home. Many families are not equipped to take on 24/7 patient care at home. They have jobs and children. I have heard my CMRN say "They want them out today." This is the reality of what Americans are facing.

[Allgood2016, LPN, LVN]

My second husband was sent to a hospice facility by his hosptalist. He spent his last three weeks thete. Everyone was compassionate and caring. Our dog got to visit daily (until last days);

and spent most of his time on the bed with "Daddy".

I was able to stay with him at night. His parents, aunt, and I were with him when he passed.

I have made everyone who needs to know (husband & children), that if I get to the point I need hospice care I am to be placed at a hospice facility.

[nutella, MSN, 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

Hi Joy, yes they can be stressed out. But - hardly ever does it come as a surprise when the patient is approaching end of life. In most cases, there has been illness that has been progressing, higher age, or other tell tale signs (" oh yes, he has been going downhill the last months").

What often happens is that nobody wants to deal with it due to denial or because they just do not want to bother or do not want to behave like adults. There are situations that are tragic where death comes suddenly. But the majority does not happen that way.

When people have anxiety / stressed they do not retain much information, which is the reason I break it down and outline an action plan with them. Sometimes it takes several days to get a solid plan together.

What I often wonder is this:

When did dying become "unacceptable" ? It has always been a part of life. We live and we die. When the family of the 95 y old patient says "what do you mean - high age? what do you mean "dying"? I wonder....

[jeastridge, BSN, RN]

Sounds like it would have been better to DC the pt first before bringing in Hospice. In patient Hospice for 2 days? Makes no sense to admit someone for a few days, pain can be handled in any nursing environment. I work in an LTACH environment and see many terminally ill patients. I hate to see the system pushing patients out the door on their families. The low budget nursing homes in the area are terrible and have horrible ratings. We receive patients from them that have not been well cared for.

I see to many families making the choice, home or cheap lousy nursing home. Many families are not equipped to take on 24/7 patient care at home. They have jobs and children. I have heard my CMRN say "They want them out today." This is the reality of what Americans are facing.

You are so right, Phil. We are caught in a difficult situation that needs to be addressed on multiple levels. While dying patients often do need to be discharged, the alternative settings can sometimes be less than ideal. We need to do a better job with compassionate, attentive nursing home care, or extending hours hospice workers can be in the home, or provide more and longer stays in hospice houses OR a combination of all of these. But that is a topic for another article! Thank you for you input. Joy

[jeastridge, BSN, RN]

My second husband was sent to a hospice facility by his hosptalist. He spent his last three weeks thete. Everyone was compassionate and caring. Our dog got to visit daily (until last days);

and spent most of his time on the bed with "Daddy".

I was able to stay with him at night. His parents, aunt, and I were with him when he passed.

I have made everyone who needs to know (husband & children), that if I get to the point I need hospice care I am to be placed at a hospice facility.

I am so sorry for your loss. I am thankful that your experience with your husband's dying in a hospice facility was positive. I know our hospice house is a wonderful place of tender loving care. As you point out, it is important to let family know what kind of care you want if the situation happens to you. Communication is key! Joy

[jeastridge, BSN, RN]

With my mom, the only people that would've been around to care for her were me and my sister, and I had been caring for her for a while at that point. The arguments of "but there are hospice facilities! And SNFs! And home nurses! And respite care! How could you not want to take your mom home?! Suck it up! You're stronger than you think! I did it for my loved one, so can you!" frustrate me. There were no open beds in hospice facilities. Her insurance wouldn't pay for a SNF and she wasn't eligible for Medicaid. The home nurses could stop by only up to three times a week for a half hour each time just to check in and drop off meds. The "respite care" was two hours once a week, maximum, if we were lucky enough to have a worker available. The wound from the cancer eroding her skin/tissues evolved quickly and veins would pop, drenching her hospital bed in blood and would take every trick the nurses had to stop because bleeding out would've been a terrible way to die.

Thankfully, the doctors and nurses agreed that it was time for us to stop being her 24/7 home nurses and be her daughters again until she passed. We were able to keep her in the hospital to get the (comfort) care she needed. As a nurse (now), I hate it when those attitudes are taken toward families who are grieving and may lack support to take care of their loved ones. Family members should be family members at the end of life, and not end up resenting their ill loved one and feeling terrible about it after they die.

ETA: Don't get me wrong, I love the hospice philosophy and our nurses and hospice liaison were absolutely wonderful. I had also had plenty of time to come to terms with what was going on and had no unrealistic expectations about her outcomes. I didn't want her kept in the hospital, but we really had little choice.

I appreciate your point that it is important for family to continue to be family and not solely caregivers. This is an important goal and one that we all need to focus in on more. Thank you for sharing your experience! Joy

[OHNBJL]

Both of my parents received Hospice care. My dad was a cardiac patient that was in failure and was placed in a Hospice unit in the local hospital. He got excellent care and the support staff was fantastic.

My mom was at home with hospice care. She had mutiple Dx and was extremely frail with severe osteoporosis and Lyme disease. The Hospice homecare nurses and staff were great but the services were limited. It was just my brother and I to suplement her care. He works for himself and I work 32 hrs per week. We hired a private aide to come in. We made her as comfortable as possible but the nights were extremely difficult. My brother ended up with most of the care as he lived in the house. I did spend some nights there, but between my job and family it was extremely difficult. In hindsight I think the better option would have been a longterm facility with a hospice unit. I know this may seem harsh to some, but until you've been through this refrain from negative comments.

Every situation is different and every family has different resource, both financial and physical to care for a dying loved one. I agree that it is imperitive that all options be explained to family members so the right choice of care can be provided. Unfortunately, the nurse that has to explain these options takes the brunt of the families anger and fear.

[jeastridge, BSN, RN]

Both of my parents received Hospice care. My dad was a cardiac patient that was in failure and was placed in a Hospice unit in the local hospital. He got excellent care and the support staff was fantastic.

My mom was at home with hospice care. She had mutiple Dx and was extremely frail with severe osteoporosis and Lyme disease. The Hospice homecare nurses and staff were great but the services were limited. It was just my brother and I to suplement her care. He works for himself and I work 32 hrs per week. We hired a private aide to come in. We made her as comfortable as possible but the nights were extremely difficult. My brother ended up with most of the care as he lived in the house. I did spend some nights there, but between my job and family it was extremely difficult. In hindsight I think the better option would have been a longterm facility with a hospice unit. I know this may seem harsh to some, but until you've been through this refrain from negative comments.

Every situation is different and every family has different resource, both financial and physical to care for a dying loved one. I agree that it is imperitive that all options be explained to family members so the right choice of care can be provided. Unfortunately, the nurse that has to explain these options takes the brunt of the families anger and fear.

You are so right! Every situation is different and it is so hard to know how things are going to go at home, or at the nursing home, or at the hospice house. We do the best we can with the information we are working with at the time. Thank you for sharing your perspective born from a difficult personal experience. Joy

[.4**]

Unfortunately the hospitals dont share their intentions. We get the call do the admissions settle the patients and family and many times we are just as surprised when the family calls us to advise us of immediate discharge. Some times we were lucky enough to have a contract bed available. Its not that we tried to keep the patient in the hospital but not only did we have the family to settle we haven't figured out how to snap our fingers and make DME appear.