Saturday, February 28, 2009

Expectations and Filters

A large component of the curriculum at my institution is the use of case studies. Some of these are "mega cases" involving an entire family (sometimes with more than one person with health issues). These families show up multiple times over the course of the undergraduate BSN program, as well as in the simulation lab, often as standardized patients. In a mega case analysis, the students analyze the situation, come up with and elaborate on pertinent issues and potential solutions, and prioritize them. They produce a paper which is handed in after a class discussion so that the students can expand their understanding through their classmates' thinking.

The case study for this class involved a 10 y.o. African American child with a history of asthma who has a near drowning event, was under the water for 10 minutes, has been vented (weaning unsuccessful) and comatose (with seizures when moved) for over six months. The family is now facing bringing him home, while not understanding the poor prognosis.

The case is meaty: there are the physiological issues and care needs of the child, the psychosocial issues of the family including mom who is already feeling exhausted and overwhelmed she and her husband have been visiting their son at opposite times of the day daily since the accident)and worry quitting her job to stay home with the child and to cut back on the cost of child care for her other two children, emotional distress of the other two younger children (one of whom witnessed the drowning), financial issues, advance care planning issues, strain between parents and extended family (boating accident was on a trip with uncle), etc.

I graded these papers, and most of them were quite good and thoughtful. During the class discussion, one of the students made the comment "shouldn't someone be realistic with these parents? Can they even manage this child at home? They have a small house, they can't expect the children to share a room with J on a vent! Where are they going to put him?"

The response struck me as blatantly classist, and possibly racist too. Thankfully, another student called the first one on her comments, suggesting that perhaps she was being judgmental. Some good discussion followed, but a short while later the same student made the comment "Would it be appropriate to point out alternatives to bringing J. home, I mean, there are places for children like this, and clearly mom is already beyond her ability to cope." I asked if she meant institutionalization and she went on to describe her cousin who provides foster care for medically fragile children. I was somewhat taken aback by this response, and tried to talk briefly about not projecting our expectations on other people, but working with them where they are, but frankly, I am new at this whole "facilitating classroom discussion" thing and did not feel like I did an adequate job.

I wanted to have a follow-up discussion the next week, but it didn't happen. If I had either been thinking on my feet, or had my "do over" moment, this is what I would've said:

We all bring our personal experience, and filters to any clinical situation. It is important to be aware of the impact that all we bring with us has on how we approach care for our patients and families. We know what we have experienced and observed, and in that context, what works, and what doesn't. We also have all been inculcated with certain beliefs based on our cultural "norms" (i.e. institutionalized classism, racism, sexism, homophobia) that lead us to make assumptions about the people we care for which may not be based in their reality but in the cultural context within which we have been raised.

What we have to keep in mind, is that our patients/families experiences can be very different from our own or what society says is right and normal, and we need to assess their needs and how to meet those needs from what they find important, and what they believe they are capable of - not what we think they can do. That doesn't mean we just abandon them to their decisions, but we support their decisions and vision as much as we can rather than trying to supplant it with our own.

I want share an example of professional expectations and family reality:

There was a woman, lets call her Rhonda, who had been the main caregiver for her parents for many years. Five years prior, Rhonda had insisted they move from the other end of the state to near her after one too many all night drives down to their home after a fall. Rhonda found them an apartment, visited regularly, helped them with their shopping and banking and such. As they declined Rhonda took over their medication management, stopped by twice a day, and when they became too frail for independent living, helped them move into an assisted living facility, where she continued to visit at least once a day and speak to the on the phone several times a day. While it was her father who had more prior health problems, it was actually her mother who was first enrolled in hospice, followed within a few months with her father also being enrolled in hospice. When their needs became too much for the assisted living, they were moved into an adult foster care home.

After a while, Rhonda decided she wasn't satisfied with the care her parents were receiving or some of the care decisions that were being made regarding them. She decided to bring her parents home to care for them herself for their "last days" ... which actually lasted almost a month.

A first the hospice team were aghast at the idea -- a single woman living in a tiny townhouse (her small living room would barely be able to hold the two hospital bed and attendant equipment): how could she possibly manage two bedbound, dying people safely and sanely? Reluctantly, they went along with Rhonda's decision. In the end, they were humbled and impressed by what she was able to do for her parents.

Rhonda didn't do it perfectly: the night before her mother died, her father insisted on getting up, fell and broke probably a rib and his collar bone. Rhonda got scared and overwhelmed at times. (But hospice was there when she needed them to help manage crises).

Her dad was holding her mom's hand when her mom died. And both Rhonda and her daughter were present for both their deaths.

What Rhonda said about this experience:

She was grateful that the last thing her mom heard was that she was loved, and it was ok to go. Same for when her dad died.

When her father died, Rhonda was holding his head and her daughter were holding his hand.

“I Know couldn’t have done this any other way than this – they died comfortably, in a home setting and together – none of this would’ve been possible in any of the long-term care settings they’d been in before."

"I feel privileged that I was in a situation where could do it."

The phrases I hear over and over from families is that caregiving is the hardest thing that they have ever done, and the best thing they have ever done: they feel grateful they were able to do this for someone they loved.

I often say we ask so much of our families regarding providing primary care. But how much do we also celebrate their strengths and abilities to do so much more than we can imagine possible?


Gail Rae said...

I was an in-home caregiver for my mother. I was her companion for 15 years, at her request, her intensifying needs caregiver for 12. You are absolutely is the hardest thing I ever did. Much of the time, at the beginning of the many "situations" that occurred, I'd wonder if I was capable of doing "the right thing". When I couldn't help it and displayed doubts in the presence of the professionals, I was always counseled to turn her over to the pros, but I never could do that and, somehow or another, I always met the challenge, even when I was doing it in the throes of severe doubt...because my mother and I were always home. Always.
I believe my presence is why she lived as long as she did. I believe that my insistence on combining her and my lives into our life is why I developed in so many ways for which I am ever grateful. I believe that my mother died believing she would never die and that she simply had a cold that would "pass" because we were together and our lives were intertwined.
We, too, had a small, inefficient home, one that was objectively judged, many times, as inconceivably inadequate to her care, but the fact that it was home overcame all practical obstacles.
I hope your post is confirmation for others who are wavering between home care and professional care to follow their instincts if those instincts seem to be leading them and their loved ones home. "Home is where the heart is," and, regarding end-of-life issues, it is the heart that matters most, I think.

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