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Is the Chaplain an Underutilized Resource in the Decedent Care Process and Organ, Tissue and Eye Recovery

by John Ruiz M.Div BCC 

APC Forum, December 2018, Vol. 20 No. 8 

This study began with a simple question. Is it possible to verify the contributions of the chaplain in the decedent care process? Nationally it is very rare for the spiritual care department to oversee the decedent care process. Being in a spiritual care department that has overseen the process for the past 14 years we wanted to explore this question. It soon became clear that verifying these contributions would be very difficult. As a result, we decided to examine the rate of organ, tissue and eye recovery as a way of exploring this question. The following contains the findings of the study. Finally, it is important to note that the chaplains do not approach families concerning donation, rather, this is the role and responsibility of the appropriate procurement agency. 
The data used throughout this article was received in quarterly and yearly reports that were provided by Kacy Walker from Lifeline of Ohio Organ Procurement and Christina DeLaSerda from Central Ohio Lions Eye Bank.
Shepherding the Process
What is shepherding the process? Shepherding the process occurs when the Spiritual Care Department has the role and responsibility of providing spiritual care in every situation when a death occurs and also assists with decedent care questions and issues. In this way, the Spiritual Care Department takes a birds-eye view of the process and remains the contact department for families. The Spiritual Care Department then assists with funeral home questions, working with staff members, contacting procurement agencies, and the coroner when necessary.
Shepherding the process is built upon two pillars: Compassionate Presence and Continuity of Care.

Compassionate Presence builds a level of trust and a safe/holy space for loved ones during times of deep despair and grief. One of the roles of the chaplain is to work with staff in creating the physical and emotional space for families and friends to be with their loved one. Within our setting this often means 2-4 hours when families can simply sit in the room at the bedside. Providing comfort to families during this time can take various forms and allowing families and friends to simply be encourages reality integration. Further, this often lends itself in assisting loved ones with the beginning of the grief process through listening to stories of their loved one or prayer.

Families seem very comforted knowing that the Spiritual Care Department is their one contact through this process. This occurs because a level of trust has been established with the chaplain. It is rare for someone to die in the hospital without previously meeting a chaplain. Therefore, this usually is a natural form of Continuity of Care between loved ones and the Spiritual Care Department.

When a sudden death occurs in the Emergency Department the relationship with families and chaplain begins upon family arrival to the hospital. Chaplains are paged to meet families for every Code Blue, respiratory stat, STEMI, stroke and trauma alert. Families arrive in various degrees of anxiety and panic;  meeting a Compassionate Presence who can assist in navigating families to where they need to go, facilitate communication between them and the medical team, remain as emotional support and then navigate additional loved ones who arrive at various times can be very comforting to families in crisis.

Many times this relationship lasts 20-30 minutes as families are able to learn from the medical team the condition of their loved one and are able to get to the bedside; other times the relationship can last much longer. When a loved one is admitted to the hospital it is the beginning of Continuity of Care as this patient is then followed up by team members within the Spiritual Care Department. In situations when a loved one dies in the Emergency Department the chaplain continues the relationship that began upon arrival thus maintaining Continuity of Care.

Often families are unable to determine a funeral home and may have further questions. In this way, calling the Spiritual Care Department again reinforces Continuity of Care and many times another contact with a chaplain (who often already knows the family) at a different time in the families’ grief.

One additional and unrelated note. When the chaplain is known to Shepherd the Process it often becomes a vehicle for hospital staff to see and use the chaplain as support and a confidant as they continue the meaningful and difficult work they do on a daily basis.

A Real Life Example (Names and details of this example have been changed to honor anonymity; though this is the type of situation experienced frequently by the chaplains in the Mount Carmel Health System.)
Example: The pager rings informing me that a respiratory stat is arriving in the resuscitation bay. I join the medical team and am present when EMS brings the patient into the hospital. The patient is actively coding and CPR is being administered. I am in the resuscitation bay  as EMS provide their report.

It is learned that it was a witnessed arrest. The patient had been complaining of not feeling well throughout the morning and after breakfast had taken a seat in his favorite chair. The patient is a 67 year old male. The patient had mentioned he was going to go back to bed and get some rest and when attempting to get up from the chair collapsed. His wife called 911 and EMS arrived shortly after. EMS began CPR at the scene and throughout transport.

After receiving this information I approach the emergency department registration desk and inform them of the patient's name and that family is expected shortly. I explain that I would meet the family in the family waiting area and registration would call me when family arrived. This is done so that family can have a quiet, private, holy space as they experience all the emotions of the day.

A few minutes later family arrives and is taken to the family room. When I enter the room I meet Nancy the wife of Jim and their daughter Stacey. They are both visibly concerned and I learn that Stacey had driven her mother to the hospital since Nancy did not think she was able to drive.

The chaplain is not medical, therefore, cannot provide medical information. At the same time I can provide emotional support and inform family of what I see. I introduce myself and inform family that I am here for support and that the medical team is doing CPR. Nancy begins to tear up and tells me that they had started doing that at the home.

We sit together as family absorbs the weight of the information. I get Kleenex and a couple of cups of ice water. Stacey begins to call her brother and sister. I inform family that I can be their eyes and ask if they would like me to check in on their loved one and report back what is happening. They seem grateful and say yes.

On the way to the resuscitation bay I stop and inform registration of expected additional family members and to have them join family in the family waiting area. I return to the resuscitation bay and CPR is still being administered. I inform the doctor of family's  location and return to be with Nancy and Stacey.

I inform them that CPR is continuing. Both seem to understand what might happen next. Keeping family informed is a way of assisting family with reality integration as difficult as that reality may be. A few minutes later the doctor arrives and I am present as family is informed that their loved one has died.

After the doctor leaves I remain as a compassionate presence. I encourage family to breathe and inform them that we are going to "slow things down". I explain that their loved one will be moved to a private room so family can have space and time to be with their loved one. I then work with the ED staff to have patient moved to a private room. This also frees up the resuscitation bay in case there is another urgent need.

Throughout the morning I meet the patient's son and another daughter with her husband and a grand-daughter and her boyfriend. Emotional support is provided to each person as needed and I escort family to view their loved one at the appropriate time.

As family is at the bedside I initiate some story telling about the patient. I excuse myself to give the family some alone time and begin the decedent care process. This includes completing a Lifeline of Ohio Procurement referral on line.

Moving in and out of the patient's room occurs naturally and there are times when new faces are in the room. I learn from family the patient's primary care physician, reiterate that we have time if additional people feel a need to get to the hospital and begin to explain what happens next including eventually getting a funeral home. I explain that sometimes this takes a day or two and that is fine and that their loved one will remain at the hospital until informed by family what funeral home is selected.

The family seems relieved at this news as the death is sudden and they have not thought about it. We exchange phone numbers so we have good ways to communicate.

I leave and inform the doctor of the PCP so that a doctor to doctor conversation can occur to determine if the PCP will sign the death certificate. A few minutes later I am informed that the PCP will sign the death certificate.
In Ohio all deaths that occur in the emergency department have to be reported to the Coroner since the death occurred less than 24 hours upon patient's arrival to the hospital. I call the Coroner's Office. By learning the PCP and calling the Coroner's Office it frees up time for the ED doctor to remain at the bedside of patients. When I call the Coroner I provide basic information of the case and then read the ED doctor's notes and the EMS run sheet that has been scanned into the patient's chart. In this situation, the Coroner did not take jurisdiction and released patient to the funeral home.

I continue to check in on the family and other patients in the ED and we arrange for a courtesy cart to arrive for family with coffee, water and a few light snacks. Each time I check in on family it provides another opportunity to give emotional support, provides time and space for loved one's to process the reality of the moment and to listen for loved one's to share a story.

At some point I receive a call from Lifeline of Ohio Procurement asking for additional information. I provide the phone number and name of family members and then connect Lifeline of Ohio Procurement with the ED Charge Nurse since there are additional medical questions that need to be asked to further determine if the patient is a potential tissue and eye cornea donor.

After nearly three hours the family informs me that they are ready to leave. I escort them to the hospital exit and family expresses appreciation for the chaplain support. In this situation, continuity of care for this family occurred from the moment they arrived to the time they left the hospital.

After, family leaves I inform the ED staff that patient is able to go to the morgue. A couple of hours later I received a call from Lifeline of Ohio Procurement and explain when family left the hospital and learn that this is a potential donor. When I return to work the next day I learn from a note written by the evening chaplain that family consented to both tissue and eye donation. Later, that afternoon I receive a call from Stacey informing me of the funeral home selected by family. She seems comforted that I was the one taking the call and it provides yet another opportunity to give continuity of care to the family.

Setting: The Mount Carmel Health System (MCHS) is located in Columbus, Ohio and serves a diverse metropolitan area. The Mount Carmel Health System includes three hospitals: Mount Carmel St. Ann's, Mount Carmel West and Mount Carmel East. Each hospital partners with Lifeline of Ohio Organ Procurement (LOOP) for organ and tissue donation and the Central Ohio Lions Eye Bank (COLEB) for eye donation.

Lifeline of Ohio Organ Procurement is a Donate Life Organization, and has been approved by the Centers for Medicare and Medicaid Services (CMS) as the designated procurement organization (OPO) serving 37 Ohio counties along with Wood and Hancock counties in West Virginia. Accredited by both the Association of Tissue Banks (AATB), LOOP provides services to 70 hospitals and the communities they serve through its procurement and tissue coordinators, and other professional staff.

Central Ohio Lions Eye Bank includes 45 counties in Ohio. COLEB currently works with 56 hospitals and about 10 hospice and Long-term Adult Care Hospitals (LTACH).   

Findings A: During a four year period (from 2013-2016) MCHS represented roughly 30% of the total recoveries that occurred within the entire COLEB service area; this would include 447 transplant donors and 40 donations for research purposes. As a result of these donations much research occurred and 894 people in the community received the gift of sight. This is an incredible number considering MCHS is only 3 of 56 hospitals in the service area!

Findings B: During a two year period (2013-2014) a survey of the percentage rate of acceptance by families for organ donation through Lifeline of Ohio Organ Procurement was conducted. During this time the overall acceptance rate though LOOP was 55% meaning 165 families consented to organ donation of the 300 families approached. Within MCHS during this same period the overall acceptance rate was 65% meaning 26 families consented to organ donation of the 40 families approached.

If the MCHS donation rate is removed the donation rate for LOOP during this period would have been 53.4%.  In practical terms if MCHS worked at the same percentage rate only 21 donations would have occurred. Therefore 5 more organ donations occurred than would have been expected and as a result lives were saved!

Conversely, if the entire LOOP service area worked at the percentage found in MCHS there would have been 195 donations within that time period instead of the 165 organ donations that actually occurred.

Findings C: Examining tissue donations for two years (2014-15) revealed  similar data. The stated goal for tissue recovery by LOOP was 32%. During this two year period 301 families were approached for tissue recovery. The stated goal would mean 96 families would consent to donation. Instead, a staggering 140 families consented to donation. This is an acceptance rate of 46.5%!

A Real Life Example (Names and details of this example have been changed to honor anonymity; though this is the type of situation that occurs within the Mount Carmel Health System.)
Example: The pager rings informing me of a hemorrhagic stroke to the trauma bay estimated time of arrival 10 minutes. As I arrive to the trauma bay the medical team is assembling and taking their positions. I learn that the patient is being life-flighted to the hospital from an out-lying hospital.

When the helicopter arrives the patient is brought into the bay and EMS gives report. I stand in the bay. Patient is motionless and non-responsive. I learn that husband of patient reports he was unable to wake patient up. Patient is named Dawn and is 42 years old. When EMS leaves the bay I follow to gather additional information. I learn that they are from a hospital about 45-60 minutes away from our hospital.

I inform the emergency department registration of patient's name and ask them to call me when family arrives. I will meet them at the registration desk at this time because I do not know where the patient will be when they arrive.

Patient is taken to Cat Scan which reveals a major head bleed and the medical team begins to make preparations to take the patient to the operating room. From Cat Scan patient is taken to an ED room while the OR staff assembles.

My phone rings and I learn that the husband of the patient has arrived. I meet Dan introduce myself and inform him that I am here for support and to get him where he needs to go. Dan seems to have a need to somewhat apologetically inform me that it took him this long to get to the hospital because he had to notify a neighbor who was able to come to the house to watch the kids. (I store this information.)

I escort Dan back to the patient's room and the medical team is able to quickly give Dan an update before they take the patient to surgery. Fortunately, Dan is able to give patient a quiet kiss on the forehead and speak some words that I was unable to hear.

When patient went to OR I escort Dan to the Operating Room waiting area and inform OR registration of the situation and they get Dan's name and a phone number. I sit with Dan. At this point he is alone and seems to be struggling to process the events of the morning. He looks numb.

I ask Dan how many children they have and he informs me of a son David age 14 and a daughter Emma age 9. I write their names down in a small notepad I carry. We sit together and simply breathe. I then ask Dan if there is anyone he thinks he might want to call. This seems to wake Dan out of a fog and he pulls out a phone and begins to call and inform family members.

I sit with Dan until a man and a woman arrive. Dan sees them (I would learn they are his parents) and they embrace. For the first time Dan begins to tear up and show some emotion. I update family of the situation. They seem to be a good support for each other and I find this to be a good time to exit. I inform them that the surgery may be lengthy and I will be checking in on them.

During the next hour or so I check in periodically and meet the sister of the patient and later Dawn and Dan's pastor. Finally, when I check back I learn that surgery had been completed and family had been escorted to the Neuro ICU. I locate family at the bedside, continue to provide emotional support and update the unit chaplain of the situation so the Spiritual Care Department could provide continuity of care.

During the next four days I would hear updates on the situation during morning team huddle and I and multiple members of the Spiritual Care Department would continue to lend support to many family members and friends as they came and went during these long days. We were also able to provide support to staff as this was a very difficult situation. Lifeline of Ohio Procurement was called by the RN because the patient met trigger on the Glasgow coma scale. This means Lifeline of Ohio Procurement begins to investigate the situation to determine if the patient might be a potential organ donor as it seemed that the patient may be progressing to brain death.

During one team huddle the unit chaplain informed the team that she had been part of the palliative care team meeting with family. In this type of meeting the chaplain serves five purposes. The chaplain is a non-threatening compassionate presence, the chaplain clarifies what the family has heard the medical team say, the chaplain allows for each person present to speak, the chaplain attempts to facilitate getting family members on the same page (this may mean creating additional time for families to process) and the chaplain is present to pray upon family request.

The next day it was reported that the family had agreed to organ donation. At some point a Lifeline of Ohio Procurement coordinator had approached the family concerning donation and Dan consented to donation. This meant additional time for the family at the hospital as Lifeline of Ohio Procurement coordinated all the angles necessary for the donation to occur. This also provided opportunity for the Spiritual Care Department to continue to give emotional support to family and friends. Family was able to provide a funeral home. The Coroner did not need to be called since a hospital doctor would sign the death certificate. The chaplain was also able to provide bereavement support services that would be available for the children and anyone who thought it might be helpful.     

This data all begs the question, "What is happening?" and "Why are these donation rates significantly higher when the chaplain, as part of the Spiritual Care Department, is shepherding the process?"

It is impossible to definitively know the answer to this question, however, it is possible to suggest a plausible theory. It is possible to speculate that due to the quality of care received by families they may be in a different place in their grief. A place where they are not as over-whelmed by the emotions of their grief and have moved to greater levels of cognitive thinking.

It is also possible to speculate that the Chaplain may be an underutilized resource for families at the time of the death of a loved one and within the decedent care process.

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