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End of life lessons from Dad: #5

dad-gradDad’s lesson #5 is that specialists aren’t always special. Nancy Fox would tell you that as human beings, we are all about creating constituencies. It is amazing how fast a group of complete strangers can bond and begin to demonstrate isolationist thinking, even in an educational setting. Creating community, collaboration, cooperation, building on each other’s strengths, these are all concepts that take a higher level of personal commitment, evolution and energy.  I’ve learned from Eldercare settings, as they work to create community, that one of the biggest challenges is specialization. In colder, traditional care organizations, you see little fiefdoms created, people holding onto their expertise as a currency of power, and you hear “that’s not my job or my Elder.” It is our nature to create artificial boundaries that divide instead of unite.

Is his regular life, Dad had two regular doctors (general practitioners); one in the community and another in the VA system. Then, he had multiple specialists: ear, eye, heart, mental health, skin, orthopedics, and vascular surgery. While in the hospital, Dad had a neurosurgeon, neurologist, hospitalist, physical therapist, and finally a hospice doctor. There were probably more specialists involved in his care that we were not even aware of. Some of these doctors rotated their time in the hospital, so they may have only been there for a few days before they were replaced by someone else. We found that each specialist had their own point of view about next steps, which made decision-making on our part even more difficult.

As we age, it is pretty normal to see the number of doctors who care for us increase. This is largely due to specialization in the healthcare field. Specialization is a good thing because medical procedures, equipment and treatments have gotten extremely complex. No one person can know it all. Specialization works, some of the time. It also fails some of the time. It fails because:

  • Communication across specialties is difficult
  • Doctors will not change what a specialist recommends, mostly because they recommended the specialist in the first place
  • The doctor’s time with an individual is short, so tunnel vision on their special system of focus works well for them
  • The person being treated has to be their own advocate, the go-between, and make sense of what is being said, (not an easy task when you are worried about what is happening in your life and you can’t do medical-speak).

Specialization and departmental organizational structure are likely to stick around. I don’t see them going away any time soon. We love having our niches! The bigger question is who is actually caring for Elder, the whole person who has dreams and life goals yet to be achieved? Who is coordinating all of their specialized care? Who is making sure that what the housekeeper or dining service person witnessed is being taken into consideration by the team that is creating the plan of care? Who has the skills and the time to do it? Who is being paid to do it? Trying to manage all the focused input from specialists must be very tough for the nurses, CNAs, family members, even the Elders themselves. Groups like sports teams understand that it is important for the individual players to get their parts right, but the game cannot be won unless everyone can collaborate and work together in the end.

Dad was on a medication that eventually caused his stroke. I don’t say that to assign blame, and I know that some things in medicine cannot be predicted. Yet, if these specialists had been coordinating their care (actually talking to each other), I wonder if the memory loss and agitation Dad was having might have been seen as a warning sign of an impending stroke and not just memory loss secondary to aging? Maybe when Dad said his blood was too thin, a coordinated team of specialists might have actually listened and made adjustments before it was too late. Did specialization play a part? I don’t know.

Working with Eldercare organizations, we talk about breaking down the silos, the departmental structure all the time. It is a hard habit to break. People spend years working on tearing down their hierarchy, only to find themselves bouncing back and forth between a flattened and a departmental structure. Dad has taught me, that specialization isn’t as special as we might think it is. Elders are better served when we rally together, bring out the best in each other, and focus on the person first. Isn’t that what person-centered, person-directed, care is really all about?

How can we help the healthcare system utilize the best of what specialization has to offer and not lose the person in the process? Is it a funding/reimbursement issue? Is it a communication issue? Is it an educational system issue? What makes creating a care partner team with the Elder so difficult?

By Denise Hyde, Community Builder, Eden Alternative (USA)

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