THE ROLE OF THE KANAREK CENTER FOR PALLIATIVE CARE

Does the responsibility of the healthcare community stop at curative treatment when it is introduced to someone with a serious, life-threatening illness? You probably answered absolutely not—if patients undergo curative treatment there should be more to their care. But the fact is, the scope for many providers is just that—to cure.

Nationally we have an aging population, who are living longer with serious and/or several chronic illnesses that affect their quality of life.  Millions of Americans live with this and the numbers are expected to grow substantially over the next 25 years, according to the Dartmouth Institute for Health Policy and Clinical Practice.

Our national healthcare system has been focused on keeping patients alive at all costs, and with the technology available, it can be for a long period of time without considering what the patient and family’s needs are, or their wishes for care and quality of life. Their physicians oversee their pain relief and symptom management but who oversees their spiritual, psychological and emotional well-being, not only for the patient but for their families?

That is what palliative care is all about. It includes curative treatment while at the same time supporting the patient and family through the course of a serious illness. Doctors, nurses, social workers, psychologists, and chaplains work together as a team to help assess the needs and wishes of their patients.

The earlier palliative care is introduced, when someone receives a serious, life-limiting diagnosis, research has validated the sooner quality of life is improved. There is less incidence of depression, the fear of the unknown is minimized and many times, the patient lives longer because they feel supported and know their needs will be met.

Seventeen years ago we lost our son, David, to cancer. He was treated in some of the best children’s cancer centers in the country. But at the time, the concept of palliative care was not introduced to us. David required psychological, emotional support and there was no one there to talk to him other than a psychiatrist who was unable, for whatever reason, to address and discuss, the concerns he had. It wasn’t until after several years following his death that I met a nurse who counseled teenagers who were dying from cancer. She had the incredible ability to discuss the hardest of all topics, one’s mortality and was able to elicit from her patients and families what was important to them at this stage of their life. That was my ‘aha’ moment. I realized that it was not a psychiatrist who needed to have these discussions with the patient, but a nurse. A nurse, who is at the bedside and who is in constant contact with the patient, could have sat with David and listened to what was important to him. At that time, nurses were not trained or expected to have these type of discussions. I started on a journey 15 years ago to tackle the issue of how to improve patient care through educating nurses and other healthcare providers on the critical role palliative care play for patients and their loved ones.

At the Kanarek Center for Palliative Care, we are educating nursing students to the many issues of how to address the multitude of needs of their seriously ill patients. Beyond pain relief and symptom management, the students will learn how to assess the psychological, emotional, spiritual, cultural issues and needs that their patients may have. Communicating effectively and sensitively are key factors that need to be taught to every healthcare provider. The art of listening is crucial in order to deliver a full assessment of what is important to the patient.

Unfortunately, there are barriers to getting palliative care integrated into healthcare. One of them includes a lack of palliative specialists to deal with the number of patients who require this type of care. Another is the public’s confusion over the distinction between palliative care, which includes curative care, and hospice, which is non-curative. There is much work that needs to be done but Fairfield University’s Egan School of Nursing and the Kanarek Center for Palliative Care will be a leader in educating nurses and other healthcare providers on what needs to be done for their patients at their most vulnerable time of life. Our nurses will be educated on how to assist in evaluating the patient’s quality of life and help in determining what is truly important to the patient and their family. We are already seeing positive changes. In time, we hope that patients who seek or require palliative care will have the resources and health professionals readily available to them. The goal of palliative care is improving quality of life, quality of care and patients having choices, and a say, over how they want to LIVE.

Twice a Year...for Two Weeks...

It happens like clockwork--twice a year. Two weeks before the anniversary of David's birthday or the anniversary of his death, my husband and I go into an emotional funk. It comes without warning but after experiencing this type of post-traumatic stress event for the past 17 years, we have learned the telltale reminders of the loss of David. We become teary-eyed, reflective, sad and experience the gut-wrenching grief we felt after he passed from cancer on August 2, 2000. Time does heal one's wounds but for anyone who has lost a loved ones, certain days of the year acutely reminds us of what we have lost. For many, it is during the holiday season, a celebration. For us, it is particularly difficult on what would have been his birthday (Nov. 15) and the day of his death. On October 31, emotionally I was fine. Then I woke up on November 1 and a wave of grief gripped me as I opened my eyes from a deep slumber. It didn't take long before I realized why I was suddenly engulfed in a depressed state.

I have learned how to cope with these episodes by talking to my husband, daughter and close friends about it, but it still overwhelms me how acute the pain is and how it doesn't diminish as time goes by. David would be 33 on November 15. What type of man would he have turned out to be? Would he have been married and have had children? As I read marriage announcements in the newspaper, I look for his friends who have married. When I see photos of his peers at their weddings, I am happy for them, but soon after, I feel jilted and then so very sad. Life is not fair, that is for sure. I did not learn this lesson until after David was diagnosed with leukemia in 1995. Prior to that time, I truly believed that if I was a good, honorable person, life would spare me from deep, anguishing pain. Well, that is not the case. As his oncologist gave us the bad news that David had leukemia when he was 10 years old, she said this comes under the category of 'shit happens'. There was nor rhyme or reason for his leukemia--it just was. The more one questions why this happens, the more upset one becomes and the guilt sets in which achieves nothing but more heartache.

David's death has changed us in so many ways. Although I honor his memory through our work at the Kanarek Family Foundation, the loss is still acute... twice a year... for two weeks. Like clockwork, my body instinctually knows how profound the loss of David is for my husband, daughter and me. And on Nov 16, and on August 3, the veil of grief will be lifted and life will return to what I now know is normal.

The Existential Slap

"What is it like to learn you are going to die"

by Jennie Dear

Atlantic Monthly, November 3, 2017

https://www.theatlantic.com/health/archive/2017/11/the-existential-slap/544790/?utm_source=atlfb

Nessa Coyle, PhD. calls it “the existential slap”—that moment when a dying person first comprehends, on a gut level, that death is close. For many, the realization comes suddenly: “The usual habit of allowing thoughts of death to remain in the background is now impossible,” Coyle, a nurse and palliative-care pioneer, has written. “Death can no longer be denied.” I don’t know exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess: My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first. My father is not a terribly calm man, but he said, very calmly, something to this effect: “Your mother has been diagnosed with breast cancer.” There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral. It was so uncharacteristic that I didn’t know then, and I still don’t know, whether the sound came from my father or my mother. I think that was the moment of her—and their—existential slap. For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the “first trauma”: the emotional and social effects of the disease. The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But “at least in Western culture, we think we’re going to live forever.” Lee’s advanced-cancer patients often tell her they had thought of death as something that happened to other people—until they received their diagnosis. “I’ve heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it’s confirmed that it is cancer,” she says. “I didn’t care about anything, ” one patient said. “I had just about given up.” The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. “It’s not necessarily verbal; it’s not necessarily what other people are telling you,” Coyle says. “Your soul may be telling you, or other people’s eyes may be telling you.” E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain lifespan within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisis ... Whether by illness or accident, our potential trajectory is suddenly changed.” In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. “I didn’t care about anything,” one patient said. “I had just about given up.” In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn’t know what it was—and then make it clear she wasn’t interested in receiving a diagnosis in the near future. “[If] you don’t like to think about these things, that works better when life is going well.” Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.” Whether or not people are able to find that balance, the existential crisis doesn’t last; patients can’t remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. “Once you’ve faced [death] like that once, it’s not new knowledge in your consciousness anymore,” she says. The existential slap doesn’t always entail mental suffering, and medical professionals who work with the dying say there are rare cases in which patients seem to skip this phase altogether, or at least experience it in a much less painful way. “People can gradually come to the realization,” Coyle says. “No one has to go through the sudden shock of awareness.” But for most, figuring out how to adapt to living with a life-threatening disease is a difficult but necessary cognitive process, according to Lee. When patients do emerge on the other side of the existential crisis, she finds that many are better off because of it. These patients are more likely to have a deeper compassion for others and a greater appreciation for the life that remains. To arrive there, they have to squarely face the fact that they’re going to die. “If you’re an avoidant person, and you don’t like to think about these things, that works better when life is going well,” Rodin says. “It just doesn’t work well in this situation because reality doesn’t allow it. It’s like trying to pretend you don’t need an umbrella or something, or it’s not raining, when it’s pouring. You can do that when it’s drizzling, but eventually, you have to live with the rain."

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.