Tapping Into One’s Inner Resources

by Jeffrey Cohn | Feb 28, 2019 | People with Cancer / Families

On the NPR website there’s an article that really caught my attention, and I think my becoming a personal coach is the reason why.  In “How Do Wishes Granted To Very Sick Kids Affect Their Health?”  the author, Tara Haelle, describes a study in the journal Pediatric Research about very sick kids who were treated at a pediatric hospital in Columbus, OH.  Some of the kids had received “gifts”- things like visits from celebrities, trips, video games, etc. while the other kids didn’t.  This was not a formal comparison study, so these two groups of kids aren’t necessarily evenly matched.  Nonetheless, the kids who got gifts had significantly fewer emergency room visits and unplanned hospitalizations than the ones who didn’t receive gifts.  The authors speculate something about the mind-spirit-body connection might be behind this.

This article brought me back to a memorable experience I had while I was a hematology fellow in Atlanta.  We had a 17 year-old young man on our service named Anthony (not his real name).  Anthony was playing basketball with his friends one day when he began to get short of breath. He was brought to the emergency room where he was found to have a hemoglobin (measure of red blood cells) of 4 (normal is 14-16).  His body had stopped producing blood cells, a condition called aplastic anemia.  In addition to his low red blood cell count, he had almost no white blood cells, placing him at high risk for infections, and almost no platelets (blood cells that help blood clot), placing him at high risk for bleeding.

Anthony was not a candidate for the most effective treatment, a bone marrow transplant because there was no suitable donor for him.  We treated him with the best available medical treatments but his blood counts only worsened.  At the time of this story he was in the hospital because of a severe infection. He was also bleeding and transfusions were losing their effectiveness.  In addition, we were having a hard time because Anthony’s veins were totally scarred from all the blood tests and intravenous treatments he had gotten.  He had a fever of 103 degrees, was bleeding from his nose and mouth, and appeared to be dying.  And we had no further treatments that we could use for his condition.

We knew Anthony was a huge fan of all Atlanta sports teams and I thought maybe we could get a member of one of the teams to come and visit this critically ill young man.  It was summertime and the baseball team, the Braves, were on a West-coast road trip.  The basketball and hockey teams, the Hawks and the Flames, were on summer vacation still.  But the football team, the Falcons, was getting ready for training camp and players were arriving to town.  I spoke to someone from the marketing department and they said “Yes, we’ll send one of our players to meet Anthony tomorrow.”

We pulled out the stops preparing for the player’s arrival.  One of the nurses baked a big cake in the shape of a football.  We got balloons, streamers, and signs to make Anthony’s hospital room festive. At first we didn’t tell him what was going on but eventually we did and, boy, did his sunken eyes light up.  An Atlanta Falcon was coming to visit him!

None of us knew who the player was going to be. Maybe it was going to be a burly lineman.  Or perhaps an athletic running back, or a fleet wide receiver.  We heard the elevator bell ring and a group emerged wearing Falcons gear.  In the center was our player- a long-haired, not particularly athletic appearing guy.  It was Mick Luckhurst, the field goal kicker.  Mick wasn’t even an American- he was a British rugby player who came to the States to play rugby and got enticed to become a placekicker.  He was a good one- when he retired in 1987 he was the Falcons’ all-time leading scorer.  But was he the kind of football player Anthony was hoping to meet?

We needn’t have worried.  Anthony saw Mick enter his room and  burst into a huge grin.  He recognized him right away.  Mick sat down on Anthony’s bed and they spoke about football for the next 30 minutes.

Then we cut the cake, everyone had a slice, and, after wishing Anthony good luck and get well soon, Mick was gone and it was over.

What happened in the ensuing days/weeks/months was what truly makes this story memorable for me.  Anthony’s fever gradually resolved as the infection finally cleared.  His bleeding diminished, too, as his platelets, while remaining low, stabilized at a level higher than that which requires transfusions.  We sent Anthony home and followed him in the clinic.  An intervention which was new became available called a Hickman catheter.  This was an implanted intravenous catheter through which blood could be drawn and medicines or transfusions infused.  Anthony’s scarred veins were no longer a life-threatening challenge.

For the remainder of the fellowship year I followed Anthony in the clinic.  His blood counts were still seriously low but not as dangerously low as they’d been.  He had an infection or two which gave all of us a scare but he pulled through them without any major issues.  My fellowship ended and I went on to the next chapter of my career.

A year after I left Atlanta I called the hematology clinic to speak with the clinic nurse I had worked with.  I asked her about my former patients; some were doing well, some had gotten sicker, some had even died.  When I asked about Anthony my nurse said, “You’re not gonna believe this.  One day he showed up and said that he was feeling better.  Sure enough, his blood counts had bounced up considerably.  Ever since then they’ve gotten better and better, and now they’re basically normal.”

That’s the story of Anthony and Mick.  You can call this an anecdote, which it is.  It’s one that supports the article referenced in the beginning of this piece.  And it’s one that supports the belief that so many of us carry: that there are things that go beyond medicine and science that are powerful though mysterious.  Doing things that help tap into this mysterious space, be it through prayer, meditation, positive thinking, or granting a sick kid’s wish can sometimes be exactly what’s needed, even at times when things seem to be almost hopeless.

And what does this have to do with being a personal coach?  The role of the coach is to help people live better, more fulfilling lives as they pursue their vision and negotiate life’s challenges.  The way coaches help people achieve these outcomes is be helping them tap into the wealth of resources that reside within themselves: wisdom, creativity, resourcefulness, strength, and so on.  I think these resources reside within that mysterious space I referenced above.  So you can add being in a coaching relationship to the list of ways to tap into this space.  And being there as a coach when this connection to one’s inner resources happens is just as fulfilling to me as what I felt when, as Anthony’s doc, I was part of a team that helped him survive a life-threatening illness and get home and well again.

Advanced Cancer, Cliffs, and Parachutes

by Jeffrey Cohn | Feb 28, 2019 | People with Cancer / Families

People have described the clinical trajectory of a patient with advanced cancer’s life as “falling off a cliff.” This means that the person can seem to be doing relatively well, and then, once the disease exceeds a certain threshold, the person deteriorates progressively, in a relatively short period of time (weeks to months), until death. For most patients with advanced cancer, this metaphor of “falling off a cliff” still applies. So what’s different now? There is a new class of drugs, collectively referred to as “immunotherapy” or “targeted therapy” that, for some people with advanced cancer, can cause the disease to be arrested, even seem to disappear for a few. And this control can occasionally last for a long time- even years. A few oncologists are even using the word “cure.” Continuing with the metaphor, I feel like the individuals for whom these new therapies are working have been given a parachute that opens as they are “falling off the cliff” and allows them to land safely at the bottom, unharmed.

The problem is, we can’t really tell yet which person who is a candidate for these new therapies will benefit and who won’t. And these therapies all have potential toxicities, some severe, some even life-threatening or lethal. So if you’re a person with advanced cancer being offered one of these new therapies, staying with the metaphor, it’s as though you’re given a sack with a parachute in it- but, until you pull your ripcord, you don’t know if it’s a working parachute or one with holes in it. Even worse, these “faulty parachutes” may catch onto ledges or brush along the cliff and cause additional injuries on the way down, making the fall to the bottom even more difficult and painful than if you never had a parachute in the first place.

Before we had these drugs- before we could offer a possibly working parachute- people “knew” what was coming and could prepare. There was some uncertainty regarding

when, and how- but not what was going to happen. This is where our current model of hospice care was developed, and it works pretty well. Knowing you are falling off a cliff without a parachute, caregivers focus on whatever interventions can be provided to have you feel as safe and comfortable as possible. None of this changes what’s going to happen once you reach the bottom, but it makes the fall as easy as it can be. And for your loved ones who will be the survivors, they have as easy a time dealing with their loss as is possible.

Now, with most current regulations, if you receive the parachute and pull the ripcord, hospice care is not an option – at least not until it’s clear that this parachute doesn’t function – and that can be perilously close to the bottom of the fall (i.e., days before end of life). During the time where it’s unknown if and how well this treatment is going to work, you and your family may be (understandably) focusing on hoping for the working parachute, even as you get closer and closer to the bottom. Uncertainty may dominate the experience for much of the time you have. And most of us don’t deal with uncertainty very well.

So what can be done? Palliative care can be a critical support during the fall. This can do much of what hospice care can do, but while still waiting to see if you have a parachute that is going to work, at least for a while. Palliative care can provide medications to treat symptoms causing suffering, spiritual support, care coordination, and care planning for whatever the future might bring.  Unfortunately, many communities have little to no access (yet) to community-based palliative care (care outside of the hospital), though that is changing.

I think the most important thing to be done is to talk. In a recent Wall Street Journal article the author described six categories of the kind of things one can talk about with someone who’s on the way down from the top of the cliff. These are: conversations about love, “identity messages” (conversations that frame who you are), religious/spiritual talks, everyday talk, difficult relationship talk (attempting to repair hurt of some kind), and “instrumental death talk” (about funerals, end-of-life care, burial, etc.). To these I would add a few more. I think talking about uncertainty can be supportive. “I imagine it must be hard living with so much uncertainty- about whether this treatment is going to work, about what new symptoms are going to appear, about whether you’ll feel better tomorrow…” or something like that can show empathy and caring about a topic we don’t talk openly about very much. I also think sharing and discussing fears and hopes (the focus of the first two questions from the game ​Hello) can provide comfort and meaning for the person with the disease, as well as opportunities to help (if asked).

One final use of the metaphor. Maybe conversations are a different kind of parachute, one that opens regardless of how well the first one is functioning. This parachute slows down the fall so that you have time to appreciate various things along the way- the blue sky, the warm air, the cool breeze, everything that makes life worth living. This parachute doesn’t slow you down enough to prevent you from hitting the bottom, but it allows you and everyone you’ve been in conversation with to have found some pleasure and meaning together. Instead of the hard canyon floor being at the bottom of the fall, there is a big, soft pillow. The fall into it is still fatal, but it’s an end that is embracing and comforting, and leaves the survivors capable of getting up from the fall and moving on with their lives with the memories of their loved ones’ words and deeds to guide and comfort them going forward.

Jeffrey Cohn MD, MHCM is a former medical oncologist/hematologist from Ambler, PA. He is currently the Medical Director for Common Practice and a personal/leadership coach for physicians.