Hospice Patient’s Family Refusing Hospice Cares

[SilverBells]

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?

[JKL33]

On 3/14/2021 at 1:53 PM, Susie2310 said:

"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.

Of course it is more nuanced and goes deeper. Some of it can't even be put into words. But I do believe that @CharleeFoxtrot put it in a nutshell and did not mean it sarcastically or in a way that is disparaging of a family.

I do think actual guilt comes into play rather often. Not guilt about having done something wrong, but guilt feelings that crop up at the idea of not doing "everything" to "save" a loved one--which is precisely how some families feel about the idea of not letting the end of life take its natural course.

On 3/14/2021 at 1:53 PM, Susie2310 said:

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.   

This runs the full gamut and is also quite variable. There are plenty of family members who find themselves in this position even though they weren't close with the patient in a way that you or I might consider close. Then there are all the people who do love each other a great deal but simply didn't share a lot about their life choices with each other. And all sorts of different family relationships.

I do think that many family members are trying their best or doing the best they know in very difficult circumstances. But that doesn't mean that some of their motives and actions aren't ethically questionable. Emotions and the ability to get outside of one's own emotions play a very big role in all of this, in my experience and observation, and there are plenty of people who simply aren't able to easily see past their own emotions. Then there are issues like ignorance, misunderstandings and lack of information that come heavily into play. Again...many, many possibilities.

Regardless, it is our job to assess the situation, employ empathy, share information and work with the family on terms that they can interpret and understand.

[JKL33]

I only have one close experience working with hospice. My loved one desired to continue a medication that was not generally covered by hospice. There was a discussion about the fact that this med seemed to be effective for a condition where it translated into a matter of comfort and quality of life. I actually can't remember if the medical director approved it to be given or if my loved one paid cash for the RX.

But that's beside the point. The main thing is that hospice care and hospice benefits were explained to us and our loved one (the patient) in a very kind but straightforward way. If people are actually informed enough to have made a legitimate choice for hospice in the first place then there is no reason to shy away from conversations about what is and isn't covered and/or reasonable. In our case we were given all the information we needed about hospice. Then when we were all going over the meds and the loved one stated she wished to continue on the particular med, we had the whole discussion about what is/isn't covered and what our other options were. It was made clear that these were our (our loved one's) choice and there did not seem to be any judgment whatsoever. It was one of the kindest and most professional experiences I have been through.

Not specifically hospice-related but I have noticed that sometimes nurses' professional demeanors slip when there seems to be a "conflict." I put conflict quotes because oftentimes these things are more misunderstanding than conflict. When a family or patient wants something and I'm not sure why someone would want that, the first thing I start with is making sure I understand the why, from their perspective. Then, if there are gaps in their information I try to fill those in, in a friendly, professional, conversational way. Ultimately much of this is not anything for us to get ripped over unless there seems to be some abuse or neglect involved on the family's part.

Has anyone sat down with this woman referred to in the OP? Like really sat down and started from the beginning as far as her goals for hospice care, what her mother would want, and then....recommending other care that may be appropriate if she doesn't actually want what hospice is about? Or even just sat down and asked her how things are going?

[CharleeFoxtrot, BSN, RN]

1 hour ago, JKL33 said:

Of course it is more nuanced and goes deeper. Some of it can't even be put into words. But I do believe that @CharleeFoxtrot put it in a nutshell and did not mean it sarcastically or in a way that is disparaging of a family.

 

Absolutely 100% correct, no disparagement meant at all.

[amoLucia]

Can you spell D E N I A L???? One of those early phases of 'grief & grieving' that we all learned in school?

By most definitions, the word 'hospice' means 'death', 'imminent death'.

That's what the dtr isn't accepting - her mother's impending death.

No matter what y'all try to implement, she'll fight it. Because to her, her Mom's NOT ready to die anytime soon. So she'll reach out to grasp any straw that she thinks will prevent the inevitable.

She needs prof guidance. And if that still fails, don't be surprised that her hospice services might get cut off and Mom will face discharge to another permanent residential NH/LTC facility. Or to home with. home services.

[amoLucia]

Hannah - spot on post.

[Guest219794]

On 3/13/2021 at 8:12 PM, Hannahbanana said:

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.

This is a truly horrible reality.
Our reality is that a family member who is misguided or delusional (or malicious) can prolong a bad death and prevent pain management.  At some point they will teach about this era in nursing schools, and students will be unable to grasp this, as it is so clearly wrong.

OP- I have no great suggestions.  From your description, this is not the result of a "knowledge deficit" that can be rectified by effective teaching, or something a social worker can fix.  Your patient will suffer because our system allows the least qualified person in the equation to to make the most critical decisions.

I had to do this periodically in ICU, and it is one reason I left.

Good luck coming to terms with this, and maybe this patient will be the exception, and the family will stop harming her.

[garbsa13]

Hey! Great questions! My name is Andrea and I have been a certified hospice nurse for 9 years and prior to that I worked in ICU/CCU. The situation you describe is something we see very often. When a loved one is focused on curative treatment rather than palliative/hospice support with the focus on comfort and quality of life; it generally means several things; there are issues surrounding the "denial" whether they be family issues or personal issues for the loved one making the decision; support issues of the decision maker not wanting to lose their loved one;not understanding what hospice is and what hospice it not. If the patient is on  a hospice service then I would recommend, as others have suggested, the hospice team meet to discuss what the MSW and Chaplain suspect is the block and create a team plan to address this. That being said; there are some people, no matter what information you provide or how skillfully and compassionately you provide that information, people will still refuse hospice for their loved one and "fight" until the last breath. As nurses who know the power of support that hospice can bring, it is very hard to accept we "can't get through" to some people. A gentle reminder, our role is not to force, push or influence our patients and family's to make the decision we think is best for them but, rather, to provide as much information and support to meet the patient and family where they are in this moment in time to allow them to make the decision that is right for them. As a nurse, this is the hardest thing I have to come to terms with and, no matter how many times it happens, every time it happens, it always feels like the first time to me. I hope this helps! THANK YOU TO ALL OF YOU FOR EVERYTHING YOU DO EVERYDAY!

[LokelaniRN]

I have found (with family members and my own experience )is that hospitals sign up patients for hospice without explaining what it means. I also did not understand why hospice was pushed on us for a family member who was going to a nursing home to die. It just did not make sense to me that a nursing home would make less money because hospice was taking a bite of the reimbursement. After a previous negative hospice experience, we sent a family member to a SNF without hospice with just the PCPs orders, and it worked out . 

[erniefu, BSN, RN]

I see these kind of people all the time when I worked in a stroke unit. These families are usually not nice people and pardon the term, Karens in real life. Even if they consented to hospice care they will still demand you feed them, check their blood sugar, and all kinds of PT/OT. I believe that this situation will continue until legislation passes where elder abuse includes seeking overly aggressive medical treatment when it is not indicated (e.g. full code for a 99 year old bed bound dementia patient, family keeping patient alive to collect social security checks, family rescinding DNR order that was signed by a capable patient etc).

[Hoosier_RN, MSN]

1 hour ago, erniefu said:

full code for a 99 year old bed bound dementia patient, family keeping patient alive to collect social security checks, family rescinding DNR order that was signed by a capable patient etc

This is the part of healthcare that I hate. I have to watch, and cannot prevent the stupidity expounded upon patients 

[SmilingBluEyes]

7 hours ago, Hoosier_RN said:

This is the part of healthcare that I hate. I have to watch, and cannot prevent the stupidity expounded upon patients 

same.

[amoLucia]

10 hours ago, erniefu said:

I see these kind of people all the time when I worked in a stroke unit. These families are usually not nice people and pardon the term, Karens in real life. Even if they consented to hospice care they will still demand you feed them, check their blood sugar, and all kinds of PT/OT. I believe that this situation will continue until legislation passes where elder abuse includes seeking overly aggressive medical treatment when it is not indicated (e.g. full code for a 99 year old bed bound dementia patient, family keeping patient alive to collect social security checks, family rescinding DNR order that was signed by a capable patient etc).who

Bolding mine.

This reminded me of the situation a couple years age of that mother who refused to disconnect her legally brain-dead teen dtr who exp serious post-tonsillectomy care issues. Had her moved to NJ to continue 'corpse care'. There was the attempt to sue BIG but the Calif law didn't support her status. Remembering all the crazy news pix & stories. The kid was eventually 'let go' after quite a while, as I believe.