Navigating Through a Health Crisis

 

A close friend of mine called me for advice. A local business owner had confided that her husband was recently diagnosed with inoperable liver cancer. Although her husband had been accepted into a clinical trial study at a major teaching cancer center, a grim second opinion from another center was too much to endure. The woman whose husband was afflicted with cancer divulged that she did not know what to do. Other than starting the clinical trial, no other alternative had been provided to them. They were utterly overwhelmed with the dire diagnosis and had never spoken about what they would if a healthcare crisis would strike. Neither institution discussed palliative care as an option. The wife was overwhelmed, needed information and guidance.

My friend wanted to help. She called me to inquire as to how to direct the family. She was well aware of my interest and passion for palliative care education and knew I would be able to provide some information. I suggested 2 websites that are necessary for anyone who is in this type of desperate situation and need guidance, such as this family was in.

Get Palliative Care     https://getpalliativecare.org/

Five Wishes                https://agingwithdignity.org/

Ideally, this type of conversation should be conducted with a family before a serious illness is diagnosed or in its early stages. My friend, instructed the woman that she needed to demand palliative care. There are resources available to patients, but palliative care is currently underutilized, not widely discussed and misunderstood.

We were in the same situation 20 years ago when our son was diagnosed with cancer, but back then, the concept of palliative care was in its infancy. We had no one to help guide us through our 5-year ordeal with our son. Being an RN, I sought out the information and had many colleagues who directed me, but no one in any of the institutions we used was comfortable with discussing what was important to the patient and family, quality of life and supportive care. Now, advanced healthcare communication training classes are being introduced to those who are interested in pursuing more education. As a healthcare provider, I totally understand how difficult these encounters are, but they are necessary and there are many professionals who have the interest to learn.

It has been a slow process, but palliative care has now become recognized and understood for the multitude of benefits it provides. It includes medical treatment, pain and symptom relief, psychological support, improved quality of life and spiritual care for the patient and their family. Research has proven that patients who are introduced to palliative care early in their serious illness, live longer and fuller lives. There are crucial elements of care that need to be discussed before a crisis strikes. Receiving bad news from your physician is overwhelming and absorbing this type of information is very difficult emotionally. It takes time to process all the information and the patient and their family need to be educated in a timely, methodical, unrushed fashion. Unfortunately, the majority of health care providers have not been educated in palliative care nor have the time to implement it. The National Academy of Medicine (formerly known as the Institute of Medicine) acknowledged the need to fill the gap for those suffering from a serious illness. Medicare has just recently started providing reimbursement to institutions for this type of discussion, but it will take several years to educate a new generation of health care providers and health institutions to fully apply this knowledge. With a growing aging population, the need is too great to be ignored.

The Kanarek Family Foundation is committed to educating nurses and other health care providers on how palliative care can improve quality of life and how to best help their patient’s at their most vulnerable time of life. The Kanarek Center for Palliative Care at the Egan School of Nursing, at Fairfield University opens its doors next week and will begin educating undergraduate and graduate nursing students on the crucial role palliative care plays in helping families. Through lectures, simulation, clinical experience and in-depth discussions, students will learn how to navigate through these difficult conversations and how to best address the needs of their patients. In time, palliative care will become an integral part of healthcare and all patients will have the availability of such a vital level of care when a serious illness strikes.

 

 

The Doctor (the movie)

 

For those of you who haven’t seen the 1991 hit movie, The Doctor, I would highly recommend you do. I have watched this movie several times and am in awe over how accurately it portrays the hospital experience after you receive a bad diagnosis. I remember watching it as a practicing RN and was astounded by the main character, a cardio-thoracic surgeon's, arrogant, self-centered approach to patient care. He diagnosed and performed the surgery without any compassion or sensitivity. His attitude was 'get in, get out and collect the money’. All that comes to a screeching halt once the roles are reversed and he receives a bad diagnosis. Suddenly he is subject to the type of care he gave his patients and he does not handle it well (who does?). From his shiny, modern office in a large metropolitan hospital, you watch him descend down the elevator into the bowels of the hospital where he later receives radiation treatment. All does not go as he expects and he realizes that life does not revolve around him. He learns a lot of valuable lessons about life, love and compassionate care and once recovered, he passes his wealth of personal experience onto his residents (a priceless scene to watch).

Until you personally have been through this type of experience, you have no idea how fragmented and isolated you feel as the patient. We all need to learn from this movie and from all perspectives. It is as relevant today as it was in 1991.

The movie has an all-star cast including William Hurt, Mandy Patinkin, Alan Arkin, Christine Lahti and Elizabeth Perkins.

I have purchased the movie, but I believe you can view it free at:

http://www.zonlinemovies.com/watch/the-doctor/

"Just Be My Mom"

Prior to David being diagnosed with leukemia in the early part of December 1995, I was working part time as a diabetes nurse educator at Stamford Hospital. I was able to balance home life with work, I loved educating patients on how to deal with their diabetes and collaborating with colleagues. All that came to a screeching halt when David, who was 10 years old at the time, started having symptoms that his pediatrician couldn’t diagnose citing an insignificant childhood nuisance. Within the course of one week, David complained of hip pain, he then started limping and was soon crawling to get around because he was in too much pain to walk. It took several weeks before a bone marrow aspiration gave us the definitive diagnosis of acute lymphocytic leukemia. I was in the pediatric oncologist’s office when I received the news. Joe, my husband, was on a business trip in California and I had the doctor call to give him the bad news. The doctor told Joe she was optimistic that David would achieve remission. Joe flew home that day. David was immediately admitted into Yale New Haven Children’s Hospital and started a two year protocol of chemotherapy. The nurse in me wanted to take charge. I asked questions, checked his IV lines and observed him. I started reading about leukemia and all that the diagnosis entailed. Emotionally, being a nurse kept me from falling apart and from feeling the sense of uncontrolled fear a cancer diagnose thrusts upon you. David was in too much discomfort to say anything about my ‘nursing’ approach to his care. The week he was in the hospital was an utter nightmare—everyone around you is trying to stay calm and trying their best to reassure you, but as a parent of an 10 year old, you see your once healthy child experience deep, agonizing pain and you can’t do anything except plead for the nurses and doctors to take it away. David was finally discharged home and we were then making daily visits to the oncologist’s office for treatment. The trip took an hour each way and David and I got to spend a great deal of time together and learned how we each coped with all the changes that were being thrown our way. We would come home from the doctor’s office late in the day, David was exhausted and complaining how tired he was. The nurse in me kept intervening. I asked him what I could do to make him feel better. Could I massage his back? Could I give him a bath? That was when my sweet boy gave me the best advice I needed to hear. He told me he just wanted us to be a family. He needed me to be his mom, not his nurse.

My Dream Journal

 

I have always kept a dream journal.

When I was 16 years old, I had a very vivid dream about my deceased grandfather. He had recently passed away and in the dream I realized he was buried in the back of our home and with a big, black umbrella. For a young 16 year old girl, I wanted to discover what the umbrella represented. A close friend of our family was a psychiatrist and he suggested that I keep a dream diary. He said it would help me ‘unlock’ my fears, challenges, hopes and dreams. Each night I kept a notebook near my bed and over a period of time, I was able to wake up, remember the dream and jot down a few words so that in the morning I could recollect the dream in its entirety. It took many years of practice, but at one time, I was able to recollect about a dozen dreams a night.

After David’s death, I began to have dreams of David at various stages in his life. The first and most vivid dream, was 2 weeks after his death while we were away celebrating Sarah’s 11th birthday in London. We had been contemplating a move there for a job opportunity for Joe and for us to get away from the acute painful reminders, living in a small town. This one night, I woke up suddenly from a very vivid dream and I realized I had an epiphany. I dreamt David called me on the telephone. His voice was urgent and he had an important message to convey to me. I interrupted him several times asking how he was, asking if he was well, that I missed and loved him. He again, interrupted my conversation and said, “Mom I have a very important message to tell you”. I paused and listened. He continued, “Mom… Sarah is going to be OK”. He hung up the phone. The dream was over. I woke up my husband and cried. I was convinced that David had conveyed his last message to me. His relationship with Sarah was very close although they were 6 years apart in age. To Sarah, a precocious 10 year old, David was her hero and best friend. I was very concerned for Sarah after David’s death. How was she going to adjust to being an only child? How would she adjust to a new school, mid-year, and in a new country? Would she be able to make new friends easily, considering the recent loss of her brother or would she be a recluse? These were all issues that plagued me. But in that instant, hearing David’s words in my dream, I knew Sarah would be OK.

Fast forward 16 years, Sarah has grown into an incredible, responsible, humorous, loving young woman who has integrated David’s wit, cautious, conservative nature into her own. The void of losing her brother, is immense. I have no doubt she ponders what her life would be if he survived (I do too). The fact is though, David was right, Sarah is OK—better than OK.

Introducing the Kanarek Family Foundation (KFF) blog

I am Robin Kanarek, the President of the Foundation. I also happen to be a registered nurse. This is my first time blogging, so bear with me.  

The goal of the KFF blog will be to share my thoughts and ideas on the direction of our foundation and, more importantly, the direction of palliative and supportive care. David, our beloved son, did not have this available to him when he died in 2000. There was very little psychological support available to him, or to us as a family. Research has demonstrated health care providers are extremely uncomfortable and not trained on  how to discuss a patient's sense of mortality or fears of dying. This was the dilemma in which we were faced when David relapsed with leukemia in 1999 and required  a stem cell transplant to save his life. In order for the transplant to take place, they had to destroy his immune system through body irradiation and infuse someone else's stem cells to generate a new immune system within his body. That donor was his 10 year old sister. After the transplantation, he was placed in strict isolation for 4 weeks. No one could go into his room without strict hand washing technique, gowning, gloving and wearing a hair net. He was very much isolated from the world. After about a week in strict isolation, David starting becoming irritable and angry at us and was very out of character for him. The health care providers said this was normal behavior for someone in isolation, but my husband and I sensed something else was really bothering him.  We had a gut feeling that something was wrong and on a much deeper level. Being a nurse, I was well aware of the work of Dr. Elisabeth Kubler-Ross, the renowned psychiatrist and expert on death, dying and stages of grief, as well as, her work with dying children. Dying children do not usually share their fears of death with their parents to spare them from additional pain. David needed to have this discussion with a professional and no one wanted to have this discussion with him. Research has since documented that this is more common than one thinks--doctors and nurses have shared in research studies that they are not trained on how to have these difficult discussions and will shun away from having them. That was the case in our situation. No one volunteered to talk to David about what we surmised was his fear of dying. After much pleading, one of David's favorite doctors finally agreed to speak to him. Three hours later, the doctor emerged from David's room exhausted. It was a productive discussion. The doctor never divulged what was discussed but he did tell us David asked some tough philosophical questions. Surprisingly, afterwards, David appeared relaxed and even happy. I interpreted this as though the 'weight of the world was lifted from his shoulders'. This is why we started the Kanarek Family Foundation. We hope to educate all health care professionals on the importance of palliative care and how to provide emotional support to those patients with a life limiting disease. We also hope to promote the need for health providers to be trained in how to have these difficult conversations (aka 'advanced communication skills').  

On this blog, I will share articles, quotes and and ask for your input on what you would like to see posted on this site. If you have questions, I will answer them to the best of my ability as a parent who lost a child to cancer, not as a health care professional.  If you have a personal experience you would like to share, you are encouraged to please be a part of this blog.

This is another journey for me to heal, so let's see how it goes.