when the body says no

 

So...it happened again. A friend just received news of his advanced stage cancer diagnosis after months of waiting for diagnostic scans to be scheduled, then waiting for the biopsy, then waiting for the results...and now waiting to schedule a PET scan to determine what treatment might still help...sending us all to our computers to research what might lie ahead for them. It makes you wonder if all the delays will affect his prognosis and outcome, but let's not go there.

"Bad news does not get better

with time."

~Mark Villareal~

Instead, let's consider a few other factors that might affect the course of his treatment.

The book I coincidentally happen to be reading is "When the Body Says No" by Gabor Mate, MD. 

In it he discusses autoimmune diseases as well as immunity against common cancers and their relationship to stress:

• Why some people appear to be more susceptible to autoimmune diseases and some cancers, while others are spared. 
• The role stress plays in the unmasking of autoimmune problems, and how coping strategies affect the course of the disease (denial, repression, anger, depression).
• How negative and positive thinking affect healing.
• Strategies that can mobilize natural immunity and promote healing.

While genetics, environment, nutrition, and lifestyle are important, stress and how we cope with it also play a role. The field of psychoneuroimmunoendocrinology takes everything into consideration, measuring hormone levels, observing changes in cellular biology, exploring personality traits, and scanning the brain in response to stress to create profiles that correlate with patient outcomes. More or less.

The problem for my friend is that he has no background in medicine and can't really understand what is happening. Denial is in play, or perhaps it's the inability to process and express the emotions that flood patients in this situation. They can feel helpless. Confused. Doomed. 

"Even miracles take a little time."

~The Fairy Godmother in Cinderella~

While his family and friends rally around him to provide support, encouragement, and comfort, the medical community mobilizes its superpowers: surgery, radiation, chemotherapy, and now, immunotherapy. It's all pretty scary.

This is the thing. Patients need to understand what is happening to them, especially when the future is uncertain. Someone needs to ask what they are thinking. What they understand. What they believe. They may need to hear that this is not their fault. That options are available. That there is hope, or that hope is running out. It involves explaining what is happening every step of the way, and the reasoning that goes into medical decision making. It means sharing our expectations for the patient. Even our fears. It means responding to theirs. If they don't process and express the feelings that flood them, they are left to flounder in a sea of confusion, fear, and despair...not a healing space around them.

"Three factors that universally lead to stress:

--uncertainty

--lack of information

--loss of control."

~Gabor Mate, MD~

This is a process that involves not just our patients, but the people who gather at their bedside because they care about them. Because they love them. When we treat patients, we treat their family and friends, as well. They need to understand what is happening and what to expect. They deserve our attention. They need our consideration, compassion, and support, too.  

The overwhelmed physician may suggest this is what we have nurses, social workers, psychologists, pastors, and family and friends for. In today's health care culture, you can get away with this. You can focus on the bulleted lists in the electronic medical record and leave the rest of it to your staff. You can apply what you know about medical and pharmaceutical technology without really knowing your patient. He will still heal. But by disengaging yourself from your patient's psychological, emotional, and spiritual life, and from his family and friends, you sacrifice your connection with him. Unless you include them in his care, you disconnect him from his support system. From his caretakers. This can leave all of them with fear, uncertainty, confusion, and dread when what they need is engagement, support, and understanding.

How do you support your patients and their families when the prognosis is poor, and the way forward is difficult? Do you know...or care...about their fear, anger, or denial and how it affects their ability to heal? What could you be doing differently?

Remember:

"Everyone you meet is fighting

a battle you know nothing about.

Be kind. Always."

~Ian MacClaren~

jan