Mom repeatedly says she will talk to the doctor about her or dad’s condition but does not bring it up at the doctor visit. Or she provides a confused summary. Or she doesn’t tell anyone of a serious diagnosis. And then you find the doctor has no authorization on file that allows discussion of their case with family. What do you do when faced with these disconnects. It is not unusual to scream in frustration.

Mom may be in denial. She may fear what reactions she will get. She may not want her children to know because she doesn’t trust they will allow her to make her own decisions. She may not want family creating drama from her situation. She is likely feeling, without being aware of it, a threat to her autonomy let alone fears about the implications of health issues.

 

Patient Advocacy Both Ways

Patient advocacy sometimes means advocating for their health to them as much as it means being their advocate to their medical community. In situations such as described above continued effort needs to be made to understand your parents’ thoughts and build trust that you are going to be there. The problem is there are more reasoned discussions with doctors than with parents. Regardless, the disconnects are a call to get involved more and prepare to speak for her with the medical community. If you can’t understand what she is saying and doing, how well do you think she is making her needs known to her doctors?

An advocate may be a member of your family, such as a spouse, an adult child, another family member, or a close friend. Another type of advocate is a professional advocate. Patient advocacy is described well at Institute for Healthcare Improvement (IHI) and the National Patient Safety Foundation (NPSF) https://www.npsf.org/page/patientadvocate?

 

What does an Advocate Do

NPSF says an advocate is a “supporter, believer, sponsor, promoter, campaigner, backer, or spokesperson.” And, it is important to consider all of these aspects when choosing an advocate for yourself or someone in your family. An effective advocate is someone you trust who is willing to act on your behalf as well as someone who can work well with other members of your healthcare team such as your doctors and nurses.

 

Sometimes Spouses Aren’t the Best

From my experience, spouses are often the first advocate for each other. They each know the other’s medical history and current status and they know their wishes regarding care.  However, when both are older and in decline this may not be the best for either of them. The stress of pursuing answers and standing up to medical authorities to reconcile diagnosis, treatment, and outcomes among many professionals may be too much. The denial of any real problem may leave things un attended until too late. And the frustration and shock of realizing you are losing a spouse can bring anger and irrational behavior towards them. When this is the case, it is time for someone else to step in and add support.

If you find yourself engaging as your parent’s advocate with the medical community, you will likely need to:

• Get permission (in writing) to speak with her doctors
• Learn about medical conditions and treatments
• Talk to your parent about their wishes
• Go to doctor visits with your parent or find someone who can
• Ask questions
• Don’t hesitate to call doctors and other professionals and seek advise
• Show up in the emergency room or as soon as possible.
• Bring or have delivered: AHCD, POLST, list of meds, brief medical history, list of doctors
• Ask more questions
• Communicate with family along the way, make sure they are informed of decisions being made
• Ask to be present when doctor examines and discusses situation with parent
• Follow up with each physician with your, and family, questions
• Ask for full explanations
• Educated yourself on the specific conditions arising
• Look for additional treatments
• Discuss as appropriate with your parent what is going on
• Participate in decision making

 

A Personal Experience with Advocacy

Here is one example of why patient advocacy is needed. My mom broke her hips and other bones many times. She fell a lot. These are often difficult recoveries. More than 30% of seniors get an infection and die in the 6 months following a major immobilizing fall. My mom was strong but eventually, she didn’t walk and used caregiver support and a wheelchair to get around. After she had been immobile for more than a year, she had an unexpected break in a previously repaired hip most likely due to the thin, weak bones of osteoporosis. The hospital team including an orthopedist, hospitalist, cardiologists and others all recommended surgery with rods, pins or possibly plates or wires depending on what they found once they began surgery. Although she was 94 years old they thought she had a good chance of survival.

The team seemed to say there was no other choice. When I arrived in the morning after being in the ER with her the night before, I was told she would go to surgery that afternoon. They seemed to be moving forward even though I had told the staff the family needed to be involved in treatment decisions. Mom didn’t want surgery but said “they need to do it”

Moving forward without family involvement was frustrating but the point that got my attention as her advocate was when I kept hearing them say ‘this is what we do so we can get her walking again’. In conversation with each of them it became clear no one doctor had the full picture and they were more focused on their capability to complete the surgery and get her walking. ‘We can do this’, they said. I explained that she had not been walking even with a walker for a year, that the break was not due to a fall, and asked why take the surgical risk when the outcome was not realistic?  There were some reasons the family was not aware of (more painful recovery) but nothing that made the surgery mandatory.

I conclude they knew what they could do. They knew what they did with every other apparently similar patient who fell and broke their hip. They were busy. But they didn’t really know their patient until the family spoke up. And thus, the goals and risks were not as well understood by all until the family initiated a deeper dialog. Her ability to survive a possibly lengthy surgery was a greater concern to the family and, in the end, not a risk they (or she) wanted to take.

 

© 2018 Rob Fellows, Parent Care Consulting