Thursday, October 29, 2015

Spiritual Suffering

SPIRITUAL SUFFERING Spiritual pain can be defined as emotional distress due to spiritual and religious issues. These issues tend to fall into three categories: Theological and Religious Belief issues; Existential and Meaning issues; and, Relationship issues. Theological and Religious Belief issues are often characterized by the inability to participate any longer with the patient’s religious practice; detrimental beliefs about God, the Divine, or Transcendent One; an incongruence between beliefs and the patient’s experience in life; and conflicted beliefs about dying, death, and the afterlife. Existential and Meaning issues are characterized by a loss of a sense of meaning or a role in life which provided meaning; a feeling of hopelessness, anger, emotional pain caused by letting go of this world; a loss of dignity, control over life, feelings of inadequacy. Relationship issues are characterized by a need to seek forgiveness from God, a loved one, or some other person; a need to forgive God, a loved one, or some other person. A need to forgive self for some offense committed earlier in life is often a cause of spiritual pain, as well. For the hospice Chaplain, the above provide an understanding of the spiritual suffering patients at end-of-life experience. Building trust with the patient, providing a non-anxious presence, and listening with compassionate intensity are all skills the Chaplain must master to provide supportive spiritual care. Through my experience with patients I often wondered what they went through before they came to hospice and into my realm of care. I came to the conclusion that a hospice patient goes through a lot before they become a hospice patient. They have been ill for some time, they haven’t felt well, and to top all of this off, like a wrecking ball comes the terminal diagnosis from the physician that they have 6 months to live. The reaction of the patient to this devastating news is called “the existential slap.” In the International Journal of Palliative Nursing (November 2004,Vol. 10 Issue 11, p520) Nessa Coyle pens an article that focuses on the psychology of patients when a physician discloses the diagnosis of a life-threatening illness. The usual habit of allowing thoughts of death to remain in the background is now impossible. Death can no longer be denied. This awareness precipitates a crisis for most individuals, who are suddenly faced with addressing and most likely rearranging, their priorities in the time they now anticipate is left. The "existential slap," occurs when the reality and inevitability of one's own personal death sinks in. (Abstract to the article) Following this diagnosis a recommendation to hospice is made. In a flurry of activity the patient and family is met by an Admissions Nurse for a 3 hour meeting to enroll the patient in hospice followed by the Case Manager/Nurse, Social Worker, and Chaplain all within a 5 day Medicare mandated window. Is it any wonder that one of the key personality traits we look for in hospice Chaplains is compassion? The patient is reeling from the diagnosis of 6 months to live and is thrown into an environment they are totally new to and may never have heard of before or at least not understood. The Rev. Dr. Kathleen Rusnak references how her new patients described their reaction to the Existential Slap. The first time I heard a patient say, “When the doctor told me I had less than six months left to live, it felt like “I hit a brick wall,”-- I didn’t hear it. The second time a patient said that to me, I heard it the first time. And then I read this metaphor in a hospice nurse-practitioner’s thesis on suffering. The interviewed patient stated that she felt like she “hit a brick wall” when the doctor told her she had six months left to live. Metaphors are very powerful. They express in symbolic language the depth of raw feeling and emotions that cannot be directly expressed in words. (www.thebrickwall2.com) For now, as there is so much more to be explored in the Existential Slap, I want to do a deeper dive into what Dr. Rusnak so candidly wrote when she described her response to the patient, “I didn’t hear it.” If there is one regret I have as a Chaplain, it is that like Dr. Rusnak, I didn’t hear or at least didn’t “get” what the patient was actually trying to communicate. Could this be what Heidegger refers to as “the forgetfulness of being”? Could it be that we Chaplains are so incredibly busy that we often are thinking ahead to the next patient, the next this, the next that that we are not in the moment, but in the next moments? And, we forget. We forget that before us is a new patient who has just started the hospice journey and is about to have the most daunting experience of a lifetime that will conclude with the end of life on this planet. Which among us has died before and lived to tell about it? I’m not talking about near-death experiences. I’m speaking of the real experience of death. With that clarification, the answer is simple, none of us. Can we grasp the magnitude of what this new hospice patient is attempting to process? It’s pretty hard, isn’t it? In this article, I simply want to urge my fellow Chaplains to do whatever is necessary to be in the moment with your patients. We who are living fall prey to the “forgetfulness of being” while the patient we serve is moving rapidly to the stage of the “mindfulness of being.” Simply put, the mindfulness of being is encapsulated in the long hours of self-reflection where the patient pours over life searching for answers to these questions and more: “Who am I? What was my purpose? Did I have a purpose? Did I waste my life? Did I love? Was I greedy? Did people love me? Will I be remembered? Did I make a difference?”

Thursday, October 8, 2015

IT’S ALL ABOUT THE PATIENT, RIGHT?

IN THE HOSPICE WORLD WE HAVE A SAYING, “IT’S NOT ABOUT US, IT’S ABOUT THE PATIENT.” WHO CAN ARGUE WITH THAT? WE EXIST TO SERVE PATIENTS AND THEIR FAMILIES. IT IS OUR CALLING, IT IS OUR PASSION, AND IT IS WHY WE GET UP IN THE MORNING. THERE IS NO DOUBT ABOUT THAT. BUT, UPON REFLECTION, IS IT REALLY ALL ABOUT THE PATIENT AND FAMILY? HOPEFULLY, IT IS A GOOD BIT ABOUT YOU, TOO! LET’S EXPLORE WHY. IN HOSPICE CARE, EMOTIONS AND SPIRITS GET FRAYED BY A NUMBER OF THINGS:  WHAT WE BRING WITH US TO HOSPICE: OUR OWN BOX OF ROCKS: PERSONAL ISSUES, FAMILY ISSUES, FINANCIAL ISSUES, DISAPPOINTMENTS, FAILURES, LET DOWNS, AND QUIRKS OF PERSONALITY, TO NAME SEVERAL. HOW WILL ANY OF THESE AFFECT HOW YOU DO YOUR HOSPICE WORK?  WHAT SKILL SET WE BRING TO OUR DISCIPLINE: ARE YOU NEW TO HOSPICE? HAVE YOU TRANSFERRED FROM A HOSPITAL SETTING OR A PARISH PASTORATE, OR HOME HEALTH SETTING? WHEREVER YOU SERVED BEFORE COMING TO HOSPICE YOU WILL FIND IT TO BE DIFFERENT FROM WHERE YOU ARE NOW SERVING. FOR INSTANCE, THE HOSPITAL SETTING FOR NURSES IS VERY STRUCTURED. HOSPICE SETTINGS TEND NOT TO BE STRUCTURED. FOR PASTORS, YOU CALLED THE SHOTS. YOU SET THE AGENDA. IN HOSPICE, YOU ARE PART OF A TEAM. YOU NO LONGER SET ANY AGENDA, INSTEAD, YOU FOLLOW ONE. THOSE EXAMPLES ARE FROM MY OBSERVATION AND OWN EXPERIENCE.  WHAT EXPECTATIONS DO YOU HAVE? THERE ARE SOME WHO HAVE ROMANTICIZED HOSPICE CARE. YES, IT IS A WONDERFUL AREA OF THE MEDICAL PROFESSION TO WORK IN. BUT, WHAT ARE YOUR EXPECTATIONS FROM THE COMPANY? THE TEAM? YOUR MANAGER? YOUR PATIENTS AND THEIR FAMILIES? CAN YOU DEAL WITH NOT HAVING A DESK ASSIGNED TO YOU? CAN YOU DEAL WITH NOT BEING THE LEADER? LIST YOUR EXPECTATIONS AND THEN REVIEW THEM. WHERE DID THESE EXPECTATIONS COME FROM? CAN YOU ADJUST THEM TO FIT THE HOSPICE WORLD? I THINK YOU CAN SEE FROM THE THREE PARAGRAPHS ABOVE THAT, INDEED, HOSPICE IS ABOUT YOU, TOO. WE TAKE OURSELVES WHEREVER WE GO. FOR THE SAKE OF OUR PATIENTS AND THEIR FAMILIES, LET’S COMMIT TO OURSELVES, OUR COMPANY, AND OUR PATIENT AND THEIR FAMILIES, THE GREAT MISSION STATEMENT OF DAME CICILY SAUNDERS, THE FOUNDER OF THE MODERN HOSPICE MOVEMENT: “YOU MATTER BECAUSE YOU ARE YOU, AND YOU MATTER TO THE LAST MOMENT OF YOUR LIFE. WE WILL DO ALL WE CAN; NOT ONLY TO HELP YOU DIE PEACEFULLY, BUT ALSO TO HELP YOU LIVE UNTIL YOU DIE.”