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?”

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.”

The Million Dollar Survey

Chaplains will have an impact on Medicare reimbursements with their provision of spiritual care. Since CMS is placing a high degree of importance on the new Hospice CAHPS Survey, it behooves every hospice Chaplain to look at the Survey to find out what is being evaluated by the surviving family member(s) who complete the Survey. If the results of the Surveys are not good, it could cost a hospice of our size (1,000+ patients) a 2% decrease in reimbursements or over 1 million dollars. So, what’s in that Survey that a Chaplain should be concerned about? The primary question the family will answer is #36: Support for religious or spiritual beliefs, including talking, praying, quiet time, or other ways of meeting your religious or spiritual needs. While your family member was in hospice care, how much support for your religious and spiritual beliefs did you get from the hospice team? The family will answer one of three ways: Too Little, Right Amount, Too Much. Please do not think that because the final 3 words in the question #36 end with “the hospice team” that it excuses the Chaplain from responsibility. As the Chaplain the family will be looking you for direction and effective spiritual support during their loved one’s and their journey in the hospice experience. Other than providing spiritual support for the patient that is loving, encouraging, and compassionate, how can a Chaplain positively impact the family? Particularly for facility patients (LTC, hospital, and hospice house), the family members are not always present when a Chaplain visits. However, the Chaplain has access to the Primary Care Giver’s telephone numbers. After each visit with the patient, the Chaplain will place a phone call to the PCG informing that person of the visit and will express sincere concern for the PCG by asking, “And how are you?” Chaplains, this is a million dollar survey. While we have a small part in it, it is a vital part. Do your hospice ministry and by all means, be sure to include a phone call to the PCG and document it.

Our biggest day!

Yesterday was our biggest day. Hundreds of guests logged onto Embraced. Welcome! Please use this site to enhance your understanding of hospice chaplaincy and use the concepts and best practice principles to grow professionally. Your comments are also welcome and are a source of encouragement. Blessings!

3 Pitfalls of Value Judgments--Leadership Tips

Before I attempt to assign the 3 pitfalls, let me define what a value judgment is. A value judgment is an assessment that reveals more about the values of the person making the assessment than about the reality of what is assessed. In any value judgment there is the assumption that the person making the judgment knows all the facts, which they don’t. Yet, when a person with a title makes the judgment, the person who was assessed as deficient is pigeon-holed with a reputation he or she cannot shake. That is a shame, but it is the reality. This happens for some reason a lot in hospice work as leaders and team members work through their day to day challenges. The 3 pitfalls include: 1. An unfair assessment of an IDT member’s worth based upon a snapshot of time in an IDT meeting. When a value judgment is made about that person, it is quick like the cutting of a vegetable with a razor sharp knife. A value judgment disregards what the person is going through at the time and disregards one of the key elements of an IDT meeting. That element is safety. In an IDT the Team comes to work but a team also comes to care for its own. Value judgments take that aspect of the Team off the table and relegate people to robots. Not a good thing. 2. Value judgments cultivate a shallow view of people. It takes no time at all to decide whether someone is good or bad at their field work based on a Team member having a bad day. Shallow leadership is unhealthy leadership and unhealthy leadership is damaging to the organization and leads to recurring employee turnover. 3. Value judgments create instability on the IDT. It doesn’t take long for Team members to pick up on the fact that their leader thinks little of them. Again, a value judgment neglects the outstanding work a Team member may do in the field with patients and families and focuses on a small portion of time with that worker. Morale suffers when workers believe their leader think so little of them. A key value of leadership is to know one’s Team, to know the individuals on the Team, to know the issues they face at work and elsewhere. If the worker was hired because of excellent skills then that worker must be given the opportunity to be human from time to time. To pigeon hole a worker without knowing that person is exceptionally unwise. Beware then of falling into the trap of making quick, unfounded value judgments.

Assuming the Burden…

What burden is the hospice Chaplain to assume? There are many burdens hospice Chaplains like every other type of Chaplain assumes. Most are personal and independent of chaplaincy. The topic to which I am referring is hospice oriented only. What burdens do patients carry when they are in hospice care? If they are lucid and able to communicate, we may learn they carry burdens related to relationships, the need for reconciliation, fear of dying, the afterlife, and concerns for the welfare of their loved one after they die, to name just a few. They come to us with these burdens. Best practice in chaplaincy means the Chaplain is able to listen and identify these burdens and be a part of the healing ministry that supports the patient through the hospice journey. What burdens do the patients’ loved ones bear? Their burdens can relate to anger with God, wrestling with the “why” of it all, the need for reconciliation with their loved one, it might mean reconciliation with a clergy person or faith community as a funeral looms in the immediate future. How do these burdens find relief and lifting and what role does the Chaplain play in all of this? Let me answer this question by providing a bulleted list that hopefully gives a starting point for the Chaplain to begin. • When providing care for a patient who is lucid, the Chaplain uses the power of active and reflective listening. Giving the patient a Safe Haven, as Bowlby suggests, is a great starting place. It may be that the patient before the Chaplain has never unburdened his or her soul to anyone and now that death is near, the time may be ripe for this to occur. • When providing care for a patient who is minimally or non-responsive, the Chaplain may find him/herself in a quandary as to what to do next. Best practice answers the quandary. After the Chaplain provides spiritual care for the patient, the Primary Caregiver is contacted by phone and a brief summary of the Chaplain’s visit is provided. The Chaplain always thanks the PCG for the privilege they have given said hospice organization to provide care for this patient. Leaving a business card and not contacting the PCG after the visit adds an additional burden to the PCG to contact the Chaplain. If you think about it, why would you even think for a moment of adding an additional burden to an already burdened person? Is that not a form of arrogance rather than servant-hood that suggests that if they want to speak to me, then they can just call me? The Chaplain is to exude a servant-mindedness. Expecting a burdened family member to contact him or her is just not a good mindset. And, really, that is the point of this article. The Chaplain communicates his or her attitude with body language and tone of voice. The Chaplain’s attitude conveys all the family member(s) need to hear. If you leave a card, great. But, make the phone call. It’s just Best Practice, plain and simple.

3 Ways to Take Initiative

A Hospice Chaplain is a difference-maker. Being a difference-maker, however, doesn’t happen all by itself. Difference-making takes place when there is activity involved. In reading Forbes: Entrepreneurs I came across this article: “How 'Difference Makers' Think -- The Single Greatest Secret to Personal and Business Success”. (http://www.forbes.com/sites/groupthink/2013/06/04/how-difference-makers-think-the-single-greatest-secret-to-personal-and-business-success/) A portion of the article reads: A comprehensive set of new studies from OC Tanner Institute (including research we’ve conducted with Forbes Insight that we’ll be issuing shortly) shows a fundamental shift in the mindset of people who achieve groundbreaking results. The mindset is this: Great difference makers shift from seeing themselves as workers with an assignment to crank out, to seeing themselves as people with a difference to make. You, Hospice Chaplain, have a difference to make in the life of each of your patients and their family members. It is your calling. It is your destiny! Here are 3 ways you can make a difference by taking the initiative. I am sure you can think of many more, but consider these thought-starters. 1. Make a difference in the life of the patient. a. By actively listening. b. By a non-anxious presence. c. By advocating for them and their needs in a long-term care facility, home setting, or hospital. d. By assisting them to finish life well. 2. Make a difference on your IDT a. With your encouraging words and positive presence b. By helping without being asked to do so c. By working with your leadership to solve problems 3. Make a difference in your Inpatient Units. a. Do not wait to be told to do something. Take action: Meet, Greet, Move boxes, Do what is necessary, but do the unexpected. b. Support the staff with special seasonal rituals. c. Support the patients and families by giving extraordinary care. Chaplains who take existing job expectations—or job descriptions—and expand them to suit their desire to make a difference find great satisfaction and do great ministry for their patients/families and their company. Do what’s expected (because it’s required) and then find a way to add something new to their work. Do something that delights, something that benefits the souls on your caseload and those who work with.