Tuesday, March 29, 2016

Horrid and Cruel Counselors

I taught a Bible study recently on the subject of suffering.  My take-away was the shocking reality that this group of men either had never been around those who were suffering emotional trauma or were simply of the mind that those who suffer deserve it.  “Well, they must have brought it on themselves,” was a comment that left me flabbergasted.  Facial expressions and body language indicated that others believed the sufferer either deserved it or they should buck up and take it.  Thankfully, there were two that seemed to get it and had a more merciful view of suffering.  Since we just celebrated Easter, I wondered if some of this group believed Jesus deserved crucifixion, but I didn’t have the courage to ask. 


Comforting the suffering is part of what a hospice Chaplain does.  In the Book of Job, we come across three men, Eliphaz, Bildad, and Zophar.  At first, they modeled outstanding pastoral care skills when they sat in the dust with Job and remained silent for 7 days and nights.  I invite you to read the previous article on this subject (March 24, 2016)


Something changed their attitudes.  They became harsh and cruel in their diatribes as to why Job suffered.  Why someone suffers is far secondary to treating the wound.  Who can argue with Isaiah 40:1, “Comfort ye, comfort ye my people, saith your God.”  People need comfort and rebuilding.  When David reflected upon his life in Psalm 23:4, he said, “He restoreth my soul.”  Restore in Hebrew has the word picture embedded in it that portrays something of value broken into many pieces…so many pieces that it would take a master-fixer-upper to put it together.  God restored David’s soul…not once, not twice, but many times.  Since David was elderly when he wrote this Psalm, his reflections on God build our souls.


Eliphaz, Bildad, and Zophar went from excellent comforters to horrid comforters.  Paul Tautges is a kindred spirit when it comes to this subject.  He writes in www.counselingoneanother.com:


Be like Counselor Eliphaz.

  • Automatically assume that sin is the cause of your friend’s suffering and, therefore, God’s hand of corrective discipline is upon him, thus implying that even the death of his children was somehow his fault (Ch. 4-5).
  • When your spiritual friend, who is experiencing deep suffering, tries to explain his situation to you, assume he is just putting spin on his story in order to justify himself. Tell him he is full of the wind and will ultimately come to destruction anyway because he is so wicked (Ch. 15).
  • Be sure to remind him that he is a great sinner who is greedy, cruel, and needs to get right with God. Leave no room for grace (Ch. 22).



Be like Counselor Bildad.

  • Conclude that—because the wicked do not ultimately prosper—your friend is wicked and be sure to tell him…just in case he has forgotten (Ch. 8).
  • Only use fear to motivate him to repent by repeatedly drawing his attention to the future destruction of the wicked (Ch. 18).
  • When you run out of things to say then resort to name-calling; Maggot is always a pretty good choice (Ch. 25).

Be like Counselor Zophar.

  • Have no mercy upon the sufferer and don’t empathize with his difficult situation. If he dares to open his heart to you—revealing his deepest doubts and fears—don’t give him a patient listening ear followed by gentle, probing questions. Instead, tell him he talks too much (after all, he is just whining), is lying, and only getting half of what he deserves anyway, therefore, he should repent (Ch. 11).
  • Be sure to remind him that he will suffer the fate of the wicked man. Whatever you do, don’t give him hope (Ch. 20).

In a nutshell, if you want to be a miserable comforter then nurture a hyper-active connection between personal sin and every form of suffering and be sure to remind your spiritual friends that they are the ultimate cause of their suffering (that they are sovereign) and that the one-word answer is always “Repent!”

Getting back to my Bible study group… Great damage is done both in families and churches when errant views of suffering and how to engage the sufferer prevails.  I have several powerful and painful patient stories that reflect this horrid and cruel way of treating one who was recently bereaved.  Is it any wonder that elderly John the Apostle concluded his worship services by exhorting his congregation to “Love one another, for love is of God.” 

Chaplain colleagues, comfort your patients and their families.  They need what you provide. 




Thursday, March 24, 2016

The Book of Job—A Resource for Hospice Chaplains

What has shaped your pastoral counseling?  What is you theology of theodicy?  What is your denominational background and what are the positive attributes of that and what are the negative attributes?  For instance, if you have a weak theology of theodicy your pastoral counsel will reflect that and come across as shallow.  If you come from a mainline denomination that is characterized by judgment and condemnation more so than by grace and mercy, your pastoral counsel will reflect that as well.  The stakes are incredibly high in hospice chaplaincy.  None of us can be closed to self-evaluation about our style of providing pastoral counsel. Yet, sad to say, there are Chaplains that are very convinced that suffering (the subject hospice chaplaincy deals with the most) is caused by personal sin and the patient or family need to get right with God.  Actually, that theory is centuries old.  Recently, our Chaplains at Cornerstone Hospice presented an in-service to their IDT’s on “Suffering: What it looks like, feels like, and sounds like.” So, I thought I would use a couple of posts here to explore the Book of Job for its value to hospice Chaplains.


It is always good to have a mentor in ministry.  A mentor can share by example what to do, what to say, how to handle things and how to say things.  I introduce you to three mentors from the Book of Job:  Eliphaz, Bildad, and Zophar.  They have degrees in counseling (like most hospice Chaplains).  They are Jobs friends and ‘counselors’.


In Job 2:11-13 we read: “Now when Job’s three friends heard of all this adversity that had come upon him, they came each one from his own place, Eliphaz the Temanite, Bildad the Shuhite and Zophar the Naamathite; and they made an appointment together to come to sympathize with him and comfort him. When they lifted up their eyes at a distance and did not recognize him, they raised their voices and wept. And each of them tore his robe and they threw dust over their heads toward the sky. Then they sat down on the ground with him for seven days and seven nights with no one speaking a word to him, for they saw that his pain was very great.”


Upon seeing Job and his countenance, they wept, the tore their robes, threw dust over their heads, sat down with Job for 7 days and nights, and they were silent.  Have you noticed that preachers/pastors have a hard time with silence?  If you came into hospice chaplaincy from a parish pastor role you know what I mean.  Consider silence as therapeutic.  It is.  What these three friends did was remarkable.  They were moved by Job’s pain and they responded in grace and love.  Think of a patient or a family you are working with now.  Are they just “one more” to be cared for?  How do Job’s friends in this passage inform your chaplaincy?  Is there something you will do differently?  What is that?


In our next post we will explore how to be a horrible pastoral counselor. 

Wednesday, March 23, 2016

Work/Life Balance

How does a Chaplain attain balance between work and life?  To answer this question we need to review expectations of work so we can meet the expectations of life.


A Chaplain at Cornerstone Hospice is expected to visit 4 patients per day, attend IDT meetings, Care Plan meetings (facility Chaplains), attend monthly Chaplain Meetings, and provide support for the Team.  The Care Plan meetings come on a PRN basis, though they are scheduled.  The responsibilities are heavy for sure.  So, how does a Chaplain complete his/her work to go home at 4:30PM?  


  1.  Organize your work.  Plan out who you will visit for the 2 weeks.  It is accepted that this may or may not happen as you plan, but it is a structure.
  2.  Use Scheduler to put your planned visits on a certain dates.  Also, put your meetings on your Scheduler.  That way you will know when you can visit your caseload.  In fact, it is best practice to put your IDT and other firm meetings on your Scheduler first, and then add your visits.
  3.   At your point of service (patient’s home, facility, hospital, or wherever you completed your visit) complete your documentation.  If you can’t do the documentation in the patient’s home, do it as soon after the visit as possible, but do NOT leave it for after work hours.  That is not fair to your family.  When your day is over, you should have all documentation completed and your computer synched.
  4.   Now, go home!  Enjoy your family.
  5.   What do you do about funerals/memorial services?  Remember, you are the patient’s/family’s Chaplain, not their Pastor.  Urge them to have the service on a week day if at all possible because you reserve your weekend for recuperation.  In our work, you MUST guard your down time.  Do NOT schedule a funeral/memorial service on the weekend.  If you are on call during a week and schedule a funeral/memorial service on that weekend, you are risking burnout. You have nothing to prove to your Manager or anyone else by over-committing yourself.  That you are a hospice Chaplain is proof enough that you are hard-working and committed.  There is no requirement for you to do a funeral/memorial service on a week-end.
  6.   If you are asked to do training for another discipline on a weekend, simply share that your availability for work is Monday-Friday and you are not available on the weekends.
  7.   Here is how I view my work/life balance:  Monday-Friday: Work Days; Saturday: Queen’s Day (for my wife); Sunday: King’s Day (for my Lord).  Protect those weekends!
  8.   Only YOU can set boundaries for your life.  I urge you to do it consistently.

Thursday, March 17, 2016

Who Cares for the Caregiver?

Writing about caregivers does not usually get rave reviews because most Chaplains are concerned for patient care.  However, with most every patient comes at least one caregiver.  Caring for the caregiver is just as important as providing care for the patient.


Let the words of Dr. Nancy Snyderman echo in your mind: “When my father fell sick, suddenly becoming the primary caregiver, I learned firsthand that caregiver burnout is real and that the stress of caregiving comes on like a full-frontal assault."  This is not just Dr. Snyderman’s story; this is the story of the caregivers we meet in hospice.  Some are absolutely exhausted.  I think of the spouse of a dementia patient.  The patient is an escape artist.  He was able to unlock 7 locks firmly bolted to the front door.  It looked like he couldn’t possibly unlock them as several were at the top of the door.  But, he somehow did unlock them all and wandered down the street.  This set his spouse into turmoil as to his whereabouts.  As she told me about this episode I realized she had as much need for me as her spouse/patient.  I think of another caregiver who was not certain what do with at Christmastime with the tree and the lights…so, she put them all up as holiday decorations.  When her dementia diagnosed mother lost it when she experienced the lights and noise of a scratchy sounding Christmas recording, this caregiver broke down in tears believing she irreparably harmed her mother.  I think of another caregiver…and another caregiver…and another caregiver.  The list goes on thousands of times.  Each caregiver carries a heavy burden.  Our role as Chaplains is to support them.  I want to suggest to you what I call 7 deadly emotions of caregivers (and, I am interested to read your response to this list.  Perhaps there are other emotions you have identified in your chaplaincy practice…): Caregiver Guilt, Resentment, Anger, Worry, Loneliness, Grief, and Defensiveness.  What have you observed?  Feel free to share.

Monday, March 14, 2016

The Family Caregiver: A Four Part Series

Part 4

This Family Caregiver, as is every other Caregiver, is in need of spiritual support.  She self-evaluates stating she suffers from a “hardened soul”, religious confusion, guilt, shame, anticipatory grief, and fear. The reader may add other observations.  Because this scenario is not isolated, Chaplains must include family caregivers in the provision of spiritual support and care.

There are other reasons caregivers experience shame from the disease process from which their loved one is suffering:  a stigmatized disease which reduces the bearer "from a whole and usual person to a tainted discounted one" (Goffman, 1963) and belief that the ‘caregiver’s’ way of living will be found out and that they will be judged and criticized. 

§A felt sense of  detachment from their religious involvement.  When a loved one becomes ill with a life-limiting illness and they are in hospice care, multiple changes occur in the life of the family.  For some, it is the loss of participation in their faith community.  These caregivers can no longer come and go as they please as they have many responsibilities with their loved-one-hospice-patient.  To those who have influence in faith communities, I offer what I hope will be insight and gentle admonition.  Dr. Zachary White describes the life of a house-bound family caregiver in his article, Inside Out (http://www.unpreparedcaregiver.com/2011/04/inside-out/):

           They’d walk by, leisurely pushing baby strollers enjoying the late summer nights.  Some would run by.  Neighbors would walk within sight, entering         and exiting my view only long enough to get their mail. Some would furiously drive out of their driveway in reverse, late for something with someone, somewhere.

I couldn’t believe no one ever noticed me. I was looking at them through the bedroom window where my mother’s rented hospital bed had been placed.  They didn’t notice me. Day after day, hour after hour, though the window next to Mom’s bed, I stared. They didn’t look back. None of them. I stared and stared and stared and yet, I was invisible.

I wanted someone to notice me. I wanted to scream through the bedroom window, “Hey, you! Yes, you! Do you know what’s happening in here! Do you know? Do you care?”  But that scene never played out. And I never yelled out. And people never looked in. They had lives to live. Places to go. Calories to burn. Mail to get. Leisure to enjoy. Lunches to make.  Errands to run. Appointments to make. As a caregiver, I didn’t.

How true.  As a caregiver, the daily duties at times can appear to be stifling.  It is as if the caregiver is a prisoner with no means of escape even in his or her own home.  As far as attending a church/synagogue/temple meeting, that would be totally out of the question.  Having made thousands of hospice related visits, I can recall with sadness the answer with all of its variations to my question, “Has the minister or anyone else from your church been by to see you?”

Too often the answer was, “No.”  What belied that answer was a heart that was hungry for the camaraderie, the “fellowship of the saints”, the common sharing of being together, connecting with the Divine.  Instead, Sunday after Sunday, meeting day after meeting day, the caregiver was with her loved one… alone.  For certain, the hospice Chaplain, if involved with the family, will provide experienced and compassionate spiritual care.  But, the beloved Pastor, Rabbi, Imam, or other spiritual practitioner is a missing piece of the family caregiver’s personal spiritual care delivery team.  An intervention the Chaplain can make is to inform and invite the local faith leader to visit the patient and provide familiar and comforting religious rituals.

Caregiver guilt and hospice.  Caregiver guilt follows at least two paths in regard to hospice care:  First, there is guilt for not calling upon hospice earlier in the disease process.  Second,  there is guilt for calling upon hospice at all!  Ken Doka in his article published in “Journeys”, April 1997, the newsletter for Hospice Foundation of America, relates the story of Marla and George:  “Marla wonders about such things. Her husband, George, was ill for a long time with cancer. In the end, he decided to forego a last treatment of chemotherapy. Marla questions continually whether his decision was correct. She also wonders why they were so late in summoning hospice. Once they came, he seemed to be more comfortable. Marla regrets that she did not call hospice earlier.”  Then, there is what appears to be the opposite response.  Reluctance to accept the terminal diagnosis, feeling that calling hospice equates to giving up hope, and simply not understanding what hospice does are the three main issues caregivers identify for feeling guilty about even contacting hospice.  The experienced hospice chaplain will be able to gently share some of the following truths:  “Calling in hospice is not an indication that you are a bad caregiver; Enlisting hospice aid leaves very few people with feelings of guilt later; Having help can lighten your load so that you can offer the very best of your giving; Hospice nurses and volunteers can help you feel confident in uncharted territory most caregivers are untrained for; Hospice provides experience with managing pain, dealing with family issues, making final arrangements, and more; Hospice workers are trained to be discreet and unobtrusive, bringing aid to the caregiving situation in a quiet, gentle way, while the primary caregiver remains just that; It is not the goal of hospice workers that life end sooner...only as comfortably as possible on its own natural schedule; Hospice workers can help you understand the body's natural shutdown process and what each new event means; Hospice counselors are available to speak to family members about issues related to death and grief; Hospice volunteers can sit with the patient so the primary caregiver can get out of the house for brief, restorative outings; Hospice nurses and volunteers offer many wonderful tips for comfort and care; Other hospice aides are available to run errands, do light housekeeping tasks, and help with bathing the patient and changing the bed linens; Hospice workers are excellent listeners at a time when it can be very comforting to find a friend who understands; Many hospice nurses, aides, and volunteers have used these services themselves in the past, with someone they love.” (The Hospice Decision, www.brainhospice.com/TheHospiceDecision.html)

The Family Caregiver: A Four Part Series

Part 3

The spiritual concern for most families is crisis.  Their sense of crisis may be characterized by the following:
§Anxiety/anger at the disease process:  Many families are overwhelmed by anxiety due to the issues of engaging hospice including the following:
§Signing of the Do Not Resuscitate Order (not mandatory). 
§Deciding to remove a breathing tube.  There is not any event in the decision-making process at end-of-life that evokes more anxiety than the decision to remove a ventilator or breathing tube.  Family members often believe that if they decide to remove the ventilator they are killing their loved one.  The Chaplain must use his/her pastoral care skills with great precision in assisting a family at this point.  What the family does not need is the Chaplain to do a lot of talking, but, instead, the Chaplain needs to listen and reflect what is being said which helps clarify for the family what it is they are feeling.  Extubations may take place in the following venues: a hospital or a hospice house.  The family may or may not be present when the tube is removed.  There may be a physician (usually an experienced hospice physician will remove the tube in a hospice house and will use great care and communication skills as he/she proceeds with the extubation) or a respiratory therapist conducting the procedure.  The Chaplain is present with the family to listen to their concerns.  Her experience with this procedure will be used to provide comfort, support, and understanding for the family.  The Chaplain’s peaceful demeanor will be of great comfort to the family.  Two actions the Chaplain will take will make the family’s anxiety abate a good deal: first, the Chaplain informs the family in response to their questions about the procedure; Secondly, the Chaplain will be with the family during the procedure.  It is at this point that silence is in order as the family will need to focus on their loved one.  Speak when spoken to is the watchword and speak sparingly is the wisdom at this time in the procedure.
§Deciding to withdraw or withhold food and water.  The Chaplain’s expertise at providing not only spiritual/pastoral care, but correct information is at stake at this juncture.  The family needs support and information.  While the Chaplain is not the sole source of information regarding this medical matter, the Chaplain is knowledgeable about the issue.  Because food and water are symbols of love and care, this issue is significant for families.  It is suggested that the Chaplain identify the feelings family members are expressing and provide support.  The Chaplain becomes an educator to explain other ways the family may show love and care.  Reviewing characteristics of natural death may help: loss of appetite, decreased fluid intake, the body’s desire to cease living.  Providing artificial food and hydration may make the dying process complicated by inducing breathlessness, ascites, nausea and vomiting, and edema.  This is where a family must review their desires and wishes to best provide for their loved one.  Certainly, this is difficult for the family, but death is a natural and normal part of life.  The Chaplain compassionately reinforces this reality.
§Deciding on a surrogate to fill the void of decision-making in the dementia patient or non-responsive patient
§Making funeral plans.
§Surrendering what appears to be autonomy in choosing medical interventions.
§Observing their loved one decline throughout the disease process. Yet others present with anger regarding what the disease has done and is doing to their loved one.  That anger may be directed at God or an institution (hospital, nursing home, even hospice), or it can be felt deeply inside, but not outwardly identified.  This can burn a hole in one’s soul, not to mention, one’s stomach lining.
§Shame and ridicule by others.  This may sound odd, but in some cases family caregivers are recipients of emotional and verbal abuse from their loved-one patient.  Anecdotal evidence of this serves as a clear explanation:
The constant battle with my husband, Barry, these last ten years has hardened my soul.  It is difficult enough being a Family Caregiver but to have to care for someone who is constantly combative and abusive can wear you down after a while.
Barry, who was always a quiet guy before his stroke ten years ago, has turned into a mean person who will verbally demean and push buttons to create arguments, leaving me feeling devastated and emotionally depleted.  Some days I worry about my health, feeling heart pain and dizzy spells; concerned about strokes. (Update: had a mild stroke early April, life goes on.)
Barry suffers from brain damage caused by two strokes which has developed trauma induced narcissistic personality disorder.  So no matter how corrosive Barry can be, he is not fully responsible for his behavior.
The battering cycle will start with Barry verbally demeaning me, and then I will pull away from the hurt to regain my balance. Barry becomes Mr. Nice Guy for a little while to regain my trust and then verbally batters me all over again.  A very vicious cycle, where I must remain understanding and strong; but I am only human.
Barry knows his behavior towards me is wrong and will only mistreat me when we are alone.  On a few occasions, when Barry thought we were alone, has a family member witnessed Barry’s treatment towards me. A small victory for me knowing someone else now understands Barry’s behavior towards me.
At one time, I even had to consider when Barry’s body was resuscitated back from the dead, Barry’s spirit had passed over to the other side, only to have an earth bound evil, malicious spirit enter his body. I must consider all possible options to this demise, as I shelve the thought to the back of my mind as a possible factor for Barry’s meanness.
On occasion, I have broken down and become absolutely enraged from Barry’s constant verbal abuse; having reached my limit, which unfortunately this is exactly what Barry wants – to push me over the edge, to see me lose it, so Barry can now take my anger and use it against me.  I am made to look and feel like the bad person and he is the victim.
When Barry passes away, not only will I have to grieve for his death, but also grieve for the entire trauma I have had to endure caring for him all these years. The only way I am surviving this, is that I have become a hard boiled egg – my shell may be broken but I still have a lot of bounce inside.
If Barry was institutionalized in long term care, the medical staff would find his behavior abusive and even disruptive, resulting in Barry being sedated.  No matter how abusive Barry becomes I would not want him sedated, so I keep searching for alternative solutions.                            Family Caregiver H.U.G.S.: CAREGIVER HELP: Stress, Abuse and Bullying: The Caregiver’s Shame, August 8, 2013
(Continued in Part 4)

The Family Caregiver: A Four Part Series

Part 2

For the family caregiver, caring for the hospice patient in the home is a noble endeavor; however, it is one that can be fraught with emotional, physical, and spiritual challenges.  Rabbi Earl Grollman, in his address, In the Face of Insanity: How Do Caregivers Maintain Their Own Sanity, given at the 25th Anniversary Conference of the National Institute for Jewish Hospice in 2010 provides great insight when he states:

A religious crisis is not infrequent during their trauma. “Are there special prayers or ceremonies that they value?” “How would they want their religious holidays to be commemorated?” “Are there favorite hymns, Bible readings, daily devotions, that offer them a source of serenity?” “Is there a clergyperson who they would like to see?” “Are there special ritual objects that they would like close to them?” ( A Star of David made my mother feel very comfortable in a wonderful Catholic hospital.) Do they ask, “Why me?” “How could God do this to me?” “Is it God’s will?” “Am I being punished?”

The questions both patients and family caregivers pose as mentioned by Rabbi Grollman are poignant.  A look at the dynamics of the family setting will serve to reveal the intensity of the emotions evoked by the questions.

The relationship between patient and spouse (now the caregiver).  How is the caregiver spouse handling the sometimes gruff manner of speech of the patient?  Wounded feelings? Impatience? Anger?  Do painful statements said by the caregiver to the patient (that would never be said if exhaustion had not set in) cause the caregiver remorse, regret, guilt?

The physical demands of caregiving.  Without a Hoyer Lift the caregiver may suffer back strain and pain.  There is the frequent changing of soiled diapers, which requires moving the patient, removal of and changing of clothing, and bedding.  There is the daily bath routine that creates its own clean-up work.  Then, there are the meals that may or may not be eaten without significant time spent on clean-up.  I shake my head at times when I read guidebooks for the caregiver of a hospice patient when advice is given on achieving six hours of sleep per night.  For many caregivers that is not possible.

The influence of the illness.  There are others in the family circle affected by the hospice diagnosis.  Are there children of the patient that are suffering? Teenagers? Adult children?  What are their feelings?  How are they managing?  What spiritual pain are they feeling? Do they ask, “Why me?” “How could God do this to me?” “Is it God’s will?”  “Am I, Are we being punished?” (Grollman, 2010)

These dynamics leave hospice Chaplains grasping to answer the question of “What to do?”  Rev. Alice Tremaine, a Chaplain with Hospice of the Bluegrass, affirms the significant benefit a hospice Chaplain bring to patients, and I add, to their families when she writes in her PlainViews article, “The Case for the Preacher-Nurse:Integrated Spiritual Care in Hospice Settings and How This May Benefit Other Health Care Settings” (PlainViews, 4/3/13 Vol. 10 No. 5):

Spiritual pain may be more pressing, especially at the end of life.

Some of the unique contributions we bring as chaplains include:

• Training for listening: We may be able to hear important health-related information that patients may not be able to tell nurses and doctors;

• An identity and calling as healers, practiced through healing rituals and other therapies such as prayer, meditation, deep breathing, etc;

• Our work is rooted in relationship, where healing takes place. Dr. Saunders has said, “We are the medicine.”

Patients have the expectation that they can engage in reflection, contemplative practices and rituals with chaplains.

The attentively listening Chaplain, practicing a calling as a spiritual pain healer, who has built a trusting relationship with the family can, indeed, be the medicine the family needs for the crisis in which they find themselves. Building a Plan of Care for the family in crisis requires identification of Goals/Expected Outcomes and Interventions.  As is the case in building a Plan of Care for patients, so it is with their family.  A discussion of what they would like to see happen in their lives will identify the Goals/Expected Outcomes and the Chaplain will share Interventions to assist meeting those goals.

The Family Caregiver: A Four Part Series

Part 1

The most overlooked element in the Plan of Care has to do with the patient’s family.  Up until now, there has been no means to document electronically the spiritual concerns of the family members as part of the Plan of Care.  However, with that said, it must be remembered that the family is experiencing stress and emotional exhaustion due to their loved one’s illness.  Therefore, it is absolutely fundamental that we include these loving caregivers in the Plan of Care.

A study led by the University of Kentucky researcher Elaine Wittenberg-Lyles found that hospice family caregivers are "second order patients" themselves and require their own unique care needs (UKNow, November 30, 2011).  “It doesn’t matter how well educated you are," said Wittenberg-Lyles. "When someone you love is dying and you are in a position to care for them at home, your home turns into a hospital room and key decisions need to be made hourly. Clinicians should assume that anyone going through the stress and chaos of caring for a terminally ill family member has low health literacy and high needs for education and support” (UKNow, November 30, 2011).

In another study, Susan C. McMillan Ph.D., A.R.N.P., F.A.A.N., presents a compelling table of spiritual care concerns in her article in the Journal Of Palliative Medicine, Volume 8, Supplement 1, 2005:


Reference Results: caregiver needs                  (Underscore mine)

Given et al., 1993   Cancer caregiver depression was associated with patient depression.

McMillan and  Mahon, 1994     Cancer caregiver quality of life was lower among hospice caregivers compared to non-caregivers and lower also for caregivers of patients with more advanced disease and lower functional status.

Kurtz et al., 1994   Among cancer caregivers, there is a weak but significant relationship between patient symptoms and caregiver depression, and between patient depression and caregiver health.

Given et al., 1999   Cancer caregiver depression was associated with new or increasing demands for assistance.

Weitzner et al., 1999   Hospice caregiver quality of life correlated with overall caregiver mental health.

Emanuel et al., 2000   Needs of terminally ill patients included transportation, nursing care, homemaking, personal care. Caregivers of patients with substantial care needs were more likely to   report higher economic burden.

Nijboer et al., 2000   Cancer caregivers’ experiences are both positive and negative. More negative experiences  are reported by women, younger caregivers, and caregivers with higher socioeconomic status.

Robinson-Whelan et al., 2001   Dementia caregivers experienced depression and loneliness for up to 3 years after the death, with levels similar to current caregivers.

Haley et al., 2001   Hospice caregivers of patients with lung cancer reported same levels of depression as  hospice caregivers of dementia patients and both reported more depressive symptoms than non-caregivers.

Haley et al., 2003   Among hospice caregivers, female gender, caregiver health problems, and negative social  interactions predicted poorer caregiver well-being.

Schulz et al., 2004   Dementia caregivers showed no improvement in depression or anxiety after       institutionalizing the demented family member.

Given et al., 2004   Cancer caregivers of patients near the end of life reported depressive symptoms which were highest in the 45-54 years age group, in caregivers of patients who were nearer to      death, in adult children, and in those who were employed. Caregivers of patients with multiple symptoms reported the greatest disruption in their schedules.

Depression, quality of life, loneliness, anxiety, disruption to life’s schedule are indicative of the need for spiritual care. The characterization that anxiety and depression show no improvement and that depression and loneliness last for up to 3 years after the death of the patient reveal the dire nature of the issues faced by family caregivers.  While I am not suggesting that a Chaplain’s work will provide a quick fix for these pernicious maladies of the spirit, I am stating that a Chaplain’s work will have a very positive impact upon the family caregivers.

Whether hospice care is provided in the home of the caregiver, friend or loved one; a retirement home; an assisted living facility; a nursing home; a hospital or an in-patient hospice facility for acute symptom management or wherever else a patient considers to be “home”, the hospice Chaplain can provide assistance that will benefit the family caregiver.  Listening, empathetic presence, appropriate touch, and pastoral counsel that is short on platitudes and long on compassion are qualities of a pastoral encounter that will give the family caregiver new energy to carry on.