GIVE:
Plan of Care
There are only two options here:
(1) Comfort Care/Extubate
(2) Full Code/Trach/Nursing Home LTACH
Can you remind me your mother's wishes on being in a nursing home?
Opening
Introduce yourselves and your names
MS Diagnosis
Patient has had MS diagnosis for 10 years. This encompasses numerous hospital admissions. Hence the sisters feel this encounter is not unique.
Until they are explained differently, they will feel this is the same old rodeo as always with their mother.
Background
Macy works in healthcare.
Reason for Admission
Vanilla Pudding Story - Laura wants to prioritize her mother's "simple pleasures" and ultimately comfort. Even though it put her in the hospital, Laura feels like she did the right thing.
The clinical team does not believe she will improve enough to have another trialed extubation.
Boundaries
We have an obligation to assess your mother at bedside/check for vitals. We have to be let in the room to be able to do that (must address Laura's concern). We also have an obligation to not cause harm and right now preventing her tube feeds is causing harm. (Must address Macy's concern.
Promises Made
They both promised they would never put her in a nursing home
Tube Feeds
Ms. Johnson has previously had lots of issues with tube feeds in other admissions/hospitals and it has been Macy's advocacy that has prevented her harm and redirected the team to appropriate dosages.
This is why she thinks she should and can do the same here.
Advanced Directives
Laura knew about Living Will. Didn't tell Macy.
Advanced Directives
A Living Will is a first-person directive made by the patient that informs the treatment team what the patient would want, or not want, done in a terminal condition. Because it is a first-person decision that has already been made, it does not require consent.
Critical Condition
Define terminality and how Ms. Johnson's condition may meet this criteria. Ask questions on how her circumstances now may be different from what Laura and Macy are used to. She is in critical condition and you do not anticipate her to survive to discharge.
Agreed at the time of MS diagnosis that Laura would leave her job and caregiver for mom full time while Macy paid the bills.
Strain
Macy is responsible for paying the bills and has not disclosed to Laura how much this has cost her. It was far more than either of them could have anticipated. This is a significant source of stress on Macy and her decision making.
Strain
Laura feels like she doesn't have a voice, and can't advocate for her mother when she is around Macy since she isn't paying the bills.
Code Status
We believe that a DNRCC is most appropriate for this patient at this time. It would shift our focus to your mother's comfort and ensure that she can eat whatever she wants and that we can prioritize her desire to be pain-free, in her home.
Interdisciplinary Team
Educate on how healthcare teams work in the acute care setting - provide perhaps and illustration/metaphor that can help the family understand.
This could explain the inconsistency they are experiencing.
More than one thing might be true?
Trust
The only person they trust is the critical care attending.
Siblings Relations
Macy is jealous of Laura and her bond with their mother. She is jealous that Laura has experienced memory-making with their mom while she is at work all day.
Preventing Care
Laura has been intentional about positive and encouraging thoughts/energy for her mother's recovery. She feels the team has not respected this and doesn't appreciate them saying she is dying when so many others say she is not.
It is a survival mechanism for her.
PEG
The healthcare team believes that Ms. Johnson is not tolerating tube feeds due to her MS progression. It is not correlated to the type of tube feeds she is receiving, or the dosage thereof.
Ending/Closure
Provide an ending for what is expected next steps. IF they are given time to make a decision, when do they need to get back to the team?
Consensus
Mom needs to go back home. Mom is not to go into a nursing home.
Feelings and Decisions
Macy feels guilty for leaving her mother with Laura all day. She feels like she has been a bad daughter. Part of her desire to preserve life could be an attempt to want a "do-over".
Loss
Laura misses her job and is exhausted with being a caregiver. But she has never shared this with Macy and doesn't want her mother to sense her desire to be "somewhere else" other than with her.