In a Medical Crisis, Call an Advocate!

Happy holidays to all of you!

This is a good time of year to look back at the year and do a survey of how well we are accomplishing our goals. I’ve been thinking about how to spread the word about healthcare advocacy, and this story struck me as a case in point.

Recently a colleague and friend said to me that she had thought about calling me (as a healthcare advocate) when her son had been very ill. He was much better now, but the family had gone through a very difficult and scary time.   I wondered what had made her hesitate while they were going through the health crisis. We met for lunch recently, and she told me the story. Here it is with many identifiers changed, and I’ve included my comments in italics where a healthcare advocate would have helped.

This 22-year-old male’s past medical history is significant only for migraines, he has been active in sports and has been routinely healthy.  He joined a fraternity in college and then moved into a house with friends where he began to have respiratory illnesses, and his health began to deteriorate. The house, which his mother describes as a dump (I thought that the house my son lived in his fourth year of university should be burned down when they moved out), was subsequently found to have black mold. He developed gastric ulcers that eventually bled and he was treated according to the appropriate protocol.

In December of 2014, he called his mother during a particularly bad respiratory infection to “come get me”.  She did, and he was found to have pneumonia.  Due to his illness he had to take an extra semester to graduate, but he recovered at home with appropriate medical care and finished school in March of 2015.

In October of 2015,  his family noted that he was becoming more and more irritable, and he began to have more and more fatigue.  (I should add here: this would not necessarily trigger a call to an advocate, but it would have been a good time for him to see his primary care doctor). Within 2 months he was sleeping more and more and eating less and less (again, see your doctor! This is not normal!).  

In January of 2016 he noticed blood in his urine. Was this a urinary tract infection? He saw a urologist, who also ordered a CAT scan, which was normal. The possibility that he had passed a kidney stone was considered, although the symptoms were not particularly characteristic for that, and my friend’s son did not think that it was likely.

A week later his nausea, irritability, and fatigue had markedly increased. He saw a nephrologist at his medical clinic, who wondered if it was a virus. A creatinine was checked (this measures kidney function) and it was found to be 3.5 (abnormally high, especially for a young person). He was scheduled to have a scope of his bladder, but that was cancelled due to respiratory symptoms (asthma?). The next day, when he saw his urologist his creatinine was 5.5 (even worse! And rapidly worsening!)  It was clear that something was going on that needed to be addressed urgently, and he was admitted to the hospital—and put on the oncology floor!

Here is the first point where a healthcare advocate would have been helpful. The family felt lost in space. And he was on an oncology floor! An advocate could have helped with the communication between the medical team and the family, and explained that this did not mean he had cancer. At a time like this, someone who can keep track of all the pieces of information and relay them calmly to a very distressed patient and family can be priceless.

He proceeded quickly to a diagnostic workup that led to the diagnosis of a rare autoimmune syndrome that attacks the kidneys.  As a kidney biopsy confirmed this, his creatinine climbed close to 7, and his blood pressure increased.  The doctors immediately began treatment with plasmapharesis (a method of removing blood from the body, separating the components, and reinfusing the cells but not the plasma--a way of getting rid of unwanted antibodies). They also treated him with prednisone, as well as an oral chemotherapeutic agent. He was told that 50% of his kidney tissue had been affected by the immune complexes. He believed, wrongly, that he was destined for a kidney transplant, and soon.

Next place for an advocate to intervene: not all medical providers communicate well with patients, and making sure the patient and family have a realistic idea of what could lie ahead is important. The emotional distress that this misinformation caused was significant, and entirely unnecessary.

He continued to have daily plasmapharesis for 4 weeks; his hospital stay was complicated by the development of a blood clot in his arm that required IV anticoagulation (overtreatment led to him bleeding from everywhere but dissolved the clot very rapidly), and a bout of hospital acquired pneumonia after about 2 weeks was treated with IV and oral antibiotics.

One of his doctors took his pathology slides to a conference because it was so unusual. He was discharged after a 4-week hospital stay on 20 different medications. His creatinine is now around 1.5.

What went well?

• Relatively rapid diagnosis after hospitalization, and appropriate treatment, with improvement in his condition.

What went not so well?

• One nephrologist told him he would need a kidney transplant in a year.
• Lack of mental health consultation
• A different nephrologist every week for all 4 weeks he was hospitalized
• No support groups

A healthcare advocate would have been able to work with the system and the patient to be sure he had some mental health consultation during the hospital stay. In addition, the family needed some support, and this also could have been facilitated. In addition, if the nephrologist is going to change weekly, the healthcare advocate can be the continuity to be sure all sides are hearing each other.

Now: He is recovering at home, rides his motorcycle, and doing much better. He is off of chemo and has weaned down his prednisone. He has gotten much feistier (he doesn’t want his mom going to doctor appointments with him). But he went through a significant period of depression, and was even suicidal. He is on an antidepressant, which helps. He still feels under the influence of “chemo brain”, but this is slowly improving.  And he is experiencing what sounds to me like PTSD.

A healthcare advocate would stay involved after discharge from the hospital, and perhaps could have hastened treatment for the depression, as well as help find resources to treat PTSD.
As my friend said, a healthcare advocate is like a SWAT team that can swoop in and make sure everything that needs attention gets attention.

My friend’s son had a fairly rapid diagnosis, good medical care, and is doing much better. Even so, the journey could have been so much less painful, scary, and a much smoother ride with an advocate.

A healthy new year to all! ​