Stepping Up Levels of Care: When is the right time and who decides?
This case presentation experiments with narrative perspectives to set up the case. After reading the case, visitors are invited to share how one might approach this situation. There is a "Post a Comment" link at the bottom of this entry and you may use the questions for reflection at the end as prompts.
Snapshots on a Day: 1
Elizabeth wakes up with a jump as the alarm blares. Hmgh, she rolls over giving into sleep that beckons. Oh, it's Monday- a Center day, Elizabeth perks up. She sits up in bed orienting herself in the room and enjoying the warmth under the blankets. She pauses as she is about to get out of bed, suddenly recalling the events of last night. No wonder she feels groggy this morning. Oh well, it can't be helped it just seems to happen.
She struggles to recall what happened, ah, yes, she woke up needing to go to the bathroom in the middle of the night and her knee gave out as she was climbing out of bed leaving her stranded on the floor. She used her lifeline call button - instructing the voice in the box NOT to call her children, rather the caretaker across the street. Before too long, she heard sirens wailing and her little neighbor who has a spare set of keys to let the firemen in. Never could understand why it has to be such a fuss, but they never seem to call the right people. She thought to herself. The fireman insisted on checking her out and her little neighbor stayed until after the firemen had gone to help her finish on the toilet and get back to bed. This responding fire unit recognized her and seemed to know her little neighbor. Does this happen often, I seem to recall we've been here before. One of the firemen asked the neighbor. The 5th time in 2 months, her little neighbor responded in a matter of fact tone. Oh well, at my age who is counting anyway, Elizabeth thought to herself.
Elizabeth pushes herself up to get out of bed, pauses to catch her breath and steady herself once upright, and shuffles to the bathroom. As she brushes her teeth, the front door opens. Lucy? Is that you? Goot Marning Meessus Elitabet. Good morning Lucy. Before long, the scent of brewing coffee seeps into the bathroom, farr you Meessus Elitabet. Lucy can you please help me with my hair, just look at this mess! Lucy brushes the knots out of Elizabeth's brown hair and curles it to her shoulders. I'm lucky I still have my own, Lucy. Most of the women at the Center, well, my age period, they don't, you know, they have wigs. Lucy continued to brush Elizabeth's course hair until it was 'just so' and then went into the bedroom to pick out an outfit. Lucy, I'll wear my purple and green suit today. Lucy reappeared with the purple and green suit almost before Elizabeth remembered finishing the sentence. What a wonderful choice, Lucy, yes I think the purple and green suit will be perfect. Lucy assists Elizabeth in getting dressed. Then Elizabeth shuffles into the dining room where she sits down to breakfast at a table set with fresh flowers, the newspaper and a bowl of cereal and fresh berries. Lovely, Elizabeth says breathlessly upon reaching the table. Where's my coffee? Heer, Meessus Elitabet. Lucy places the mug on the table. I wonder what the program is at the Center today. Oh, it's Monday.... Elizabeth hesitates, Oh, never mind, we'll see when I get there.
Meessus Elizabet time to go. Oh! Engrossed in the newspaper after finishing her breakfast, Elizabeth lost track of time and took a last swig of now cold coffee. OK, let's go. As she stands up, she puts her hand on the table to steady herself. Damn knee, she thought. Then Elizabeth suddenly remembered last night. That nice little neighbor had come, always hears the fire engines she says. Maybe she'll come and visit me in the evening sometime, not just when the ambulance comes. Stepping out the front door, she feels the ocean breeze temper the warm LA air. I miss my friends back in Wisconsin, but Santa Monica sure beats the mid-west in winter! She thought to herself, though she knew she complained endlessly about being here - the weather was something worth celebrating. As she and Lucy stood waiting on the corner for the shuttle to pick her up, they saw the usual set of neighbors in and out on their various morning routines. Up the street, John was washing his car. Stan was walking his pug. Sarah popped out from her garden gate.
Hi Elizabeth, Hi Lucy. The little neighbor waved and approached them, and asked with a smile,How is everyone today? "Wonderful"
Goot marning Serrah, Lucy greets her with an ear to ear grin.
Great, I have to run to a meeting, so happy to see you looking well this morning.
Sarah, do come by and visit me some evening.
Of course, Elizabeth, I will soon.
As the car pulled away, Elizabeth suddenly remembered last night, Oh! I didn't even say thank you, she thought to herself.
Lucy, did you know I fell again last night. I tried to call you but your phone wasn't working.
Oh, deedant no you called.
Well, fortunately Sarah heard the sirens and let the firemen in, good thing she has a key or knows where the spare key is, does she have a key, well, then she helped me get back to bed. Funny, she never says anything, as if it didn't happen. Nice young woman.
Lucy nodded. Thinking to herself that she listened to the sirens with trepidation, but stopped responding to middle of the night calls 2 months ago. Lucy wasn't paid to come in the middle of the night and had grown impatient. Too many, too often, the girls needed to take responsibility for their mother and though Elizabeth said it was her knee, Lucy knew it was her drinking.
It happened again last night Jack. Mom fell out of bed. She is going to really hurt herself one of these days; this is getting ri-DICULOUS.
You know there is nothing we can do, by the time we drive over there, it's what 40 minutes later and she's left lying on the floor wondering what is taking so long. Remember last time, we just HAVE to let the fire department respond.
If WE still lived down the street, WE could be THERE for her and respond, not like, RRRR. I thought the whole reason for Shyla taking over our house was to be CLOSER to Mom, then why the heck isn't she ever THERE? And if she isn't going to ever be THERE, then why not get Mom into a nursing home? Why? Why NOT?! THIS is irresponsible, she's 88. This is CRAZY. My d--- sister doesn't give a crap about Mom.
Look getting angry and into the bad blood between you isn't going to help you or your mother.
Don't you start in on me now, aren't you on my side Jack?
Of course I am but if you want to help your mother.
IF? IF? OF COURSE, I WANT to HELP her. I CARE about her. Why doesn't Shyla do something for ONCE! I'm calling her.
Don't do that.
Don't tell ME what to DO, I hate you!
OK, hate me, but call your mother and see how she is before you rail on your sister, ok?
Shyla, it's Lydia.
Hi Lydia, how are you?
HOW am I? How the hell do you think I am?! I'm furious!
What's WRONG? Don't you KNOW!
Mom fell again last night.
Is she OK? Lydia interjected quickly with great concern.
Lydia sighed with relief feeling her whole body relax not having realized it had tensed but acutely aware of the avalanche of pelting that was underway but not hearing what was being said.
She's OK, the question is WHERE are YOU? And why don't YOU know about THIS? You are the first person on the Lifeline call list, you are the one who lives 2 doors away NOW, so where are you? And WHY don't you know about this?
Oh, I haven't check my voicemail yet tod-...
Well, LIFELINE called you, then ME, and I'm wondering WHERE the hell YOU are because the whole point of having Mom here and you buying our house is that you can look after Mom, right?
Well, yes, to be closer to Mom is part of it, Lydia. I'm in the country right now, we're just about to harvest, so is Mom OK?
Yes, she's OK.
Good. Sorry you had to be woken up and to drive across town.
We didn't drive across TOWN, we let the Fire department go since the last time we went, Mom got hysterical waiting for us to get there, we NOW live 45 minutes away, REMEMBER. And the last time, we went, Mom thought the lifeline had abandoned her - REMEMBER?
Oh, yes. Well, Lydia, this is why we have Lifeline because we can't always be there.
No but this is the 5th TIME in 2 months, don't YOU think we should see about MOM going into a nursing home or getting more extensive help? This is dangerous!
Lydia, Mom doesn't want to go into a nursing home; she's enrolled in a day health program and she's happy with that. This is an imperfect situation, she's getting older, it isn't always graceful, but at least she's happy with this arrangement, and she definitely does not want to be in a nursing home - you know that.
Well, maybe it's our responsibility as her CARING children to make SURE that she is SAFE! Oh, that's RIGHT, now you're the one who makes the decisions.
Lydia, Mom is doing very well at home, she has a thorough support system and she is happy to be at home. You moved her out here to be closer against her wishes and she has been miserable - all of her friends are back in Wisconsin, well, those who are left of them.... to further confine her and restrict her for our convenience and peace of mind simply doesn't seem fair.
SHYLA, this is NOT about MY convenience and comfort, nor is it about my peace of mind; you are going to see, mark my words... something tragic will happen to Mom. God knows why she made you the one to make her decisions. You DON'T CARE about her.
Lydia, of course, I CARE about Mom, I just have a different understanding of caring.
Hello, Mrs. Lyon, how are you today? Natalie, a case manager at the Adult Day program, observed Elizabeth's gate as wobbly, but unchanged as Elizabeth Lyon sat into the seat in front of her for their regular appointment.
Just fine dear.
How was the weekend?
I had my granddaughter visit, she's home from college. She's quite a charmer really. We had a fun time and went out for dinner.
That sounds like fun. And how are your girls?
Oh, well, you know, it breaks my heart that they are still quibbling, you know, they won't speak to each other. She sighed and looked despondent for a minute, then continued, But respectively they are fine.
I know that has been a source of distress for you. Are you managing around the house OK? Any changes?
No, everything's just fine. That dear Lucy comes to help me in the morning and afternoon, and everything else is OK.
Have you had any falls?
OK, well, things seem pretty much the same. I'll check in with Shyla as I do routinely, and oh, I see here that Lydia left a message.
Did you have a fall over the weekend? There was a long pause.
Elizabeth searched her memory. No, not that I can ... Oh, yes, just last night, I almost forgot. Don't tell the girls, you know they'll just worry or fuss, you know, but I guess I did. I got up to go to the bathroom and the knee gave out - it's the darndest thing... Natalie listened as Elizabeth went through the story about the firemen and the neighbor... but don't tell the girls, I don't want them to know.
Natalie began gently, I know that you want to protect the girls and I want to make sure that you understand that the Lifeline Button calls both your girls homes before they call the fire department, only if neither child can assist you, then the fire department will come.
What? The lifeline buttons tells the children, well, what a silly service. I don't want that, the whole point is so that they won't be bothered. I don't want the kids to know. What am I paying for this for then?
Natalie continued, so the girls already know and from my records, it looks like this is the 3rd time this has happened in the last 2 months. Elizabeth looked at Natalie blankly, and realizing that Elizabeth was overwhelmed, Natalie stopped, I guess you might be tired today?
A little bit, I don't know why, just a little fuzzy, maybe I didn't get enough rest last night.
OK, well, I'll check in with the girls and I'll check in with you again later in the week.
Interested Parties presented here:
Lucy, the part time caretaker
Lydia, daughter #1
Jack, Lydia's husband
Shyla, daughter #2
Natalie, Case Manager at the Adult Day Center
Questions for Reflection
How might one approach this situation?
What are the issues raised in this case?
Is this an ethical dilemma? If so, how would you articulate the ethical conflict?
Do you need any additional information? If so, what is it and why/how is that relevant?
What knowledge (ethical, legal, medical, philosophical) might be relevant for analyzing this case?
What framework might be appropriate to assist thinking through this case?
What might be a reasonable path forward? Are there multiple acceptable approaches?
How would each of the different perspectives justify their response?
Please leave comments, ideas, questions, and insights using the comments feature below. When you leave a comment, you may do so anonymously or with your name, but it would be very helpful if you indicated your role/discipline to assist clarifying your perspective. (RN, Geriatric care plan manager, family member, elder, caregiver, MD, MSW, Case manager, etc.)
One of the first things that I noticed about the case are the amount of assumptions (or ways that we think about a situation based on our perspective, often in a subconcious manner) made by each individual. These assumptions color the way in which they interact with one another and how they view the possibilities for responding to the situation. For instance, Elizabeth makes the assumption that because of her age, it is normal to fall a number of times. One of the assumptions of the first daughter is that caring for her mother involves making sure she is safe. As we attempt to come to an ethical plan of care we must remember that each individual will come to the conversation with assumptions. I feel like this point is a common starting point for ethical learning and yet the conversations I have encountered regarding care planning are often void of this realization.
Another element of the case is reflected by Elizabeth's inablity to remember. This information made me think about the process by which we decide when someone is incapable of making decisions for their own care. Often, memory loss occurs gradually-we have all experienced this in patient care. However, it seems that our decision to allow a patient to make the decisions about their care does not always reflect the same rate of loss of ability. In what ways can we improve the system to determine one's capability in relation to the gradual or quick change in mental capacity? Can we become more senstivie to the ways in which a participant/patient can still communicate about their care while still being responsible about keeping them safe?
October 8, 2008 at 01:37PM | Nicole Berry | edit | remove
Thank you for your insightful comments.
Indeed, we often develop a perspective based upon partial information. When we don't realize our views are based upon assumptions, we may miss opportunities for seeing options and we may get 'stuck' in our limited view of the situation. A critical first step in developing a plan of care is to make sure that everyone has the same information and a shared understanding of the current situation and future trajectory.
Here, as you point out, there is a divergence in the understanding of what "caring about Mom" means. For Lydia, caring means to make sure that Mom is safe and protected, so that Mom will not experience a preventable injury. Lydia fears that if her Mom remains at home alone, her Mom will suffer a fall or incident that would leave her severely debilitated or even dead. Lydia recognizes that her Mom may not want a more restricted environment, but Lydia believes that it is in her Mom's best interests to have a more restricted environment in the short term in order to have the likelihood of living longer. Lydia seems concerned about being a responsible child and protecting her mother from physical harm.
One might say that she holds the view that her Mom's best interest is her safety and being protected from harm that could arise from being in an unmonitored environment. As you have noted, one might want to explore this understanding of "caring," whether she understands that even in a more restricted environment her Mom might experience a physical injury or death, whether her Mom's desire for independence has been a consistent theme expressed and to what extent honoring those wishes at this juncture may be important, whether there are other steps that Lydia might take to feel more comfortable with her Mom's safety that would not lead to moving her Mom to a more restrictive environment (having the house reviewed by an occupational therapy consultant, seeing about a home health aide in the evenings, etc).
For Shyla, caring appears to mean allowing her Mom the maximum amount of independence and keeping her Mom happy - letting her Mom make decisions and to live as she wants. Shyla recognizes that her Mom may have a fall or some other incident that might leave her debilitated; it appears that Shyla is willing to accept this short term risk because Shyla feels that a more restrictive environment at this time, when her Mom doesn't want it, would leave her Mom more depressed. Shyla wants her Mom to be as happy as possible at this juncture and feels regret about her Mom's sadness that resulted from leaving her friends in Wisconsin so the girls didn't have to worry about Mom so far away.
One might say that she believes that it is in her Mom's best interests to respect her Mom's decisions about her living environment and to honor her Mom's ability to accept the risks that the environment presents. One might want to explore with Shyla what in her mind might signal 'ready' for a more restricted environment and how she might approach a time when what her Mom wants is in conflict with what her Mom's actual needs are. Also, one might want to discuss with Shyla whether there might be a time when her Mom's decision making capacity might be impaired such that to honor her Mom's decisions would run the risk of 'abandoning' her Mom.
There remains an open question about whose responsibility it is to fill the "gaps" in care, such as the falls at night. Whether there is a self interest in not having to "worry" about Mom that justifies or prohibits placing Mom in a more restrictive environment. Also, who is the appropriate party to be responding to these falls - the daughters, the Fire Department (public resources), or someone else?
As you have recognized there is an indication of early memory loss that may, now or at some juncture, call into question whether Elizabeth has the capacity to make some decisions. At what point does a gradual loss of memory lead to a loss of decision making capacity is an issue frequently encountered in elder ethics and elder care. As you note, it is important to assess and reassess capacity as it may decline gradually, suddenly or fluctuate. An ethical priority is to honor a person with decision making capacity's right to make decisions about his/her well-being and care to the fullest extent possible. To honor the decision of a person who has decision making capacity is to respect a person's autonomy, but to honor the decision of a person who lacks decision making capacity is to abandon the person.
As a person's capacity begins to diminish, we approach decision making capacity with the question of whether a person has the capacity to make a specific decision. Decisions of greater consequence require greater decision making capacity. At home, in adult day health centers and in clinical environments, people recognize that elders are often more alert in the morning, and care givers often seek to address questions at these times when elders are most likely to have the highest capacity for decision making. Also, an additional approach to empower elders in determining their care is to assess whether there may be consistency over time even in the face of memory loss. As you have noted, improving systems to assess capacity in the changing state (gradual, in flux, sudden) and increasing sensitivity to maximize the opportunities to honor decisions when people begin to have diminishing capacity are important.
I look forward to hearing others' thoughts the issues you identified, these comments which reflect one of many approaches to considering these issues, as well as comments on other issues that remain in this case.