Hospice Patient’s Family Refusing Hospice Cares

[SilverBells, BSN]

For those of you who are familiar with working with hospice patients and their families, have any of you experienced difficulties or challenges with them accepting hospice cares?

There is one example that I can think of is a lady who has been a Hoyer lift for months and who has been unable to speak for awhile.  Daughter keeps requesting speech therapy to work with her mom to improve communication even though it has been explained multiple times her mom probably won't speak again.  The patient has a variety of pain medications available but the daughter refuses to allow staff to administer without contacting her first and sometimes she is not available when pain medication is needed. Daughter also insists that resident stay on Coumadin even though it is no longer medically necessary which means more INR checks for us and more finger pokes for the resident.  Most of the time, Coumadin is discontinued when someone enrolls on hospice,  but daughter won't listen to reason. 

To me, it seems like the daughter doesn't really understand what hospice care does and doesn't involve.  Any other similar experiences? Any tips to convince the daughter to let us treat pain, discontinue INR checks, etc?

[JBMmom, MSN, NP]

So is the patient already enrolled in hospice? If so, it sounds like the hospice coordinators need to have a meeting with this daughter because some of the care being provided would not be available to a hospice patient, in my experience. When I was in LTC, when the patient was enrolled in hospice care, the majority of orders came through the hospice organization. They would not have allowed coumadin, INR checks, labs, most hospitalizations, etc. 

[SilverBells, BSN]

1 minute ago, JBMmom said:

So is the patient already enrolled in hospice? If so, it sounds like the hospice coordinators need to have a meeting with this daughter because some of the care being provided would not be available to a hospice patient, in my experience. When I was in LTC, when the patient was enrolled in hospice care, the majority of orders came through the hospice organization. They would not have allowed coumadin, INR checks, labs, most hospitalizations, etc. 

Yes, she is already on hospice.  I agree that goals of care need to be established because many of the daughters' requests don't coincide with a hospice care modality 

[Hannahbanana, BSN, MSN]

Your job is not to make her do or allow what you want. Your job is to help this family, including this unhappy woman, move towards their mother’s death in whatever way works for them.

Has she taken part in any of the counseling services hospice offers? She’s giving you evidence of considerable pain, anticipatory grieving, loss of role, and hopelessness, and is doing the best she can with it in the face of what she perceives as unhelpful ideas from you.
I think she knows exactly what hospice means: her mother has no hope of recovery and will die sooner rather than later, likely without being able to say anything to her. It’s no wonder she grasps at the straws of speech therapy and therapeutics of any kind. 
Ask for some help and advice from the team social worker and chaplain/spiritual counselor. I think they have more to offer this sad, angry woman at this point than reasons for Coumadin and your ideas about pain management. Those may follow later.

For now, this is the part where you assess the effects of your plan of care, make a few new nursing diagnoses, set some new goals, and recalibrate your plan to nurse your patient and family in a way that addresses them. 

[SilverBells, BSN]

Thanks, but I'm still not convinced she understands what hospice means.  Either that or the daughter is in a place where she is unrealistic about the resident's prognosis.  She expresses concerns about pain, but then doesn't really want us to use the morphine or dilaudid that is available.  INR finger sticks can be a source of pain.  She also expresses concerns about anxiety, but hasn't allowed us at all to use the lorazepam ordered.  Daughter talks about difficulties swallowing, but still wants her mother on all of her normal medications.  At least taking her off the Coumadin would be one less pill to swallow.  The daughter also complains that the food being served is not what the resident would have wanted, but then won't fill out the meal tickets herself or really offer any suggestions as to what we should actually serve.  Wants therapy to work with her mom even though her mom hasn't walked or spoken in over a month, if not longer.  She brings up concerns, but then doesn't accept any suggestions, so who really knows what she actually wants.  And since the resident doesn't speak anymore, there's not really any way to know if what her daughter is proposing is what she wants either. 

[SilverBells, BSN]

It's probably not an option to trade cases, but I've often wondered if a different nurse/manager might do better with this case.  Thoughts? 

[CharleeFoxtrot, BSN, RN]

10 hours ago, SilverBells said:

Thanks, but I'm still not convinced she understands what hospice means.  Either that or the daughter is in a place where she is unrealistic about the resident's prognosis.  

What you are missing is the psychology of patient's family members who are acting out guilty feelings or pre-grieving  in an inappropriate way. They often over manage-or under manage- such things as pain because that's all they can do for their loved on, they can't control the patient's imminent death so they try and control what they can.

"See how much I love you Mother? I'm making them do (whatever)  or not do (whatever) because I care so very much for you."   ~your loving daughter

In other words, get the Hospice LMSW more involved to her the daughter move through the stages of grief in a healthy way. 

You can assist this by referencing "quality of life" over "quantity" as subtly as possible. 

[Davey Do]

12 hours ago, SilverBells said:

To me, it seems like the daughter doesn't really understand what hospice care does and doesn't involve.  Any other similar experiences? 

This is a difficult situation and you've got some good responses, SilverBells.

I'm not sure if I can offer any more advice, but would like to share with you not a professional, but a personal experience.

My little sister Cat was diagnosed terminal and put on Hospice last May. She was prescribed appropriate meds inclusive of morphine and oxycontin. I was pleasantly surprised at the low scheduled and PRN doses that keep her pain manageable.

Her husband Dan was very attentive to Cat, but once said, "I just don't like the idea that she'll be on pain meds for the rest of her life".

I was somewhat taken aback by this statement, but was able to caringly reply, "Dan, the rest of Cat's life will not be all that long".

Dan responded by looking at me and nodding. I sort of realized Dan didn't have a realistic perception of Cat's condition. For example, he was making plans to be with her into the Autumn when I knew Cat's lifespan was down to days.

Which causes me to consider something, SilverBells: Are there others involved in this patient's care who have a realistic perspective and can maybe get through to the daughter?

Sometimes, someone close can reach people in ways no others can.

[CharleeFoxtrot, BSN, RN]

14 minutes ago, Davey Do said:

Her husband Dan was very attentive to Cat, but once said, "I just don't like the idea that she'll be on pain meds for the rest of her life".

I was somewhat taken aback by this statement, but was able to caringly reply, "Dan, the rest of Cat's life will not be all that long".

Dan responded by looking at me and nodding. I sort of realized Dan didn't have a realistic perception of Cat's condition. For example, he was making plans to be with her into the Autumn when I knew Cat's lifespan was down to days.

It's how we protect ourselves...denial is a wonderful way to shield ourselves from that which we can't cope with yet.

[NightNerd, MSN, RN]

The conversation - in general and in this situation - needs to be shifted to what the patient wants, or would want if she could speak for herself. Did the patient have an AD? Has anyone asked the daughter what the patient had said about what she would want in a situation like this? Is it possible that this woman is trying her best to honor her mother's wishes while balancing her own grief?

People don't do these things out of malice or defiance; it really typically is them trying to give their loved one the best chance at life. Our job is to respect their goals of care, while offering all the information the family needs to make that decision.

What are the daughter's specific protests to the medications? A common one is that they're too sedating. Can the doses be decreased, at least temporarily, so she feels more at ease with them being given? Maybe review the PAINAD scale with her as she's visiting (or on a video call) with the patient, particularly if you assess that she's painful at that moment. Explain that at a rating of 8, 9, 10, these are the typical medications used to treat severe pain like she's seeing right now in her mom. Is she concerned that meds like morphine will hasten her mom's death? Provide education about the matter - but remember that it's up to her to determine what her mom would want and to follow that.

Ultimately, it's not about convincing her to do anything differently. Find out what she wants and what she believes her mother wants, and teach her what is realistic and what you can do to make her goals possible - and what you can't. It's possible that hospice isn't compatible with her goals, or that she merely needs more details about how each of these actions is helping or hindering her mother's comfort. It's trite, but try to meet her where she is; she is slowly losing her mom and clearly wants to do all she can for her during this time.

[Hoosier_RN, MSN]

I've worked in hospice and at this point, you SilverBells, don't manage anything. Speak to your facility MSW AND the hospice MSW. They will guide the conversations from there. Grief is an odd thing that has different effects on all of us. The MSW is trained to assist families and patients with the stages of grief, amongst other things

[Susie2310]

On 3/14/2021 at 8:01 AM, CharleeFoxtrot said:

What you are missing is the psychology of patient's family members who are acting out guilty feelings or pre-grieving  in an inappropriate way. They often over manage-or under manage- such things as pain because that's all they can do for their loved on, they can't control the patient's imminent death so they try and control what they can.

"See how much I love you Mother? I'm making them do (whatever)  or not do (whatever) because I care so very much for you."   ~your loving daughter

Respectfully, I think your example of: "See how much I love you Mother? etc." is generally inaccurate.  I think staff often tend to perceive that the patient's family member is motivated by guilt and is trying to control the staff by making gestures in order to show their loved one (the patient) how much they care for them. It's usually more complicated than that and goes much deeper.

Family members are usually trying their best to care for their loved one during a very painful time, and are trying to think about what their loved one would want, even if staff perceive that family members are under-managing or over-managing  their loved one's pain.  Family members have an emotional relationship with the patient and very often know the patient well and know their preferences.  

It is important that staff have the maturity and compassion to be able to meet family members where they are, as individuals, in order to be able to support them.  To be able to do this one needs to be able to listen to them with an open mind.