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Some Medical / Pastoral Advice On Making Difficult Hospital Visits

 

Introduction

I am writing this because I have an uncommon employment history that has provided me with a very unique skill-set and perspective when it comes to making difficult and challenging hospital, hospice or nursing facility visits.

I worked as a nurse practitioner in a busy neurosurgical practice for 30 years. During that time, I saw patients in the office, I made rounds in the hospitals, and I assisted in the operating room. At times, I would be the first person from our team to evaluate patients in the E.R. or ICU. I loved my work. I had the privilege of working with a gifted neurosurgeon. We were in a position to help people in dire situations. It was challenging and it was incredibly rewarding at the same time. Unfortunately, in the neurosurgery world, one deals with frequent emergency / life threatening conditions. At times, there is no hope for a satisfactory outcome. At times you grow weary of having such terrible things (trauma, brain tumors, etc.) happen to nice people. It’s extraordinarily difficult to tell a family that their young child is not going to survive the trauma. Or to tell a vibrant, active individual that they have a malignant brain tumor that could likely end their life within 12-15 months. Also, in this particular practice, we took care of hundreds of children. In my opinion, we should never have to say “pediatric” and “neurosurgery” in the same sentence. As a Christian, I often had to lean hard into my faith to enable me help the people / families we were caring for.

After thirty years of healthcare, I retired and joined the staff at our church. It’s a large, multi-site, non-denominational church. My wife and I were asked to move from our home of 36 years to a city about two hours away to launch a new campus in another large city. We served that church for nine years. I served as the Executive Pastor and the “gray hair” on a young church staff. I loved being in full-time ministry. As you might imagine, I made many of the hospital calls for our team and often tried to take a younger staff member along with me to help train up the next generation of church leaders, pastors, shepherds.

Because of these vocational experiences, I have a very unique perspective on pastoral hospital calls, especially the “hard visits”. I would consider these to be examples of those “hard visits”:

            – fetal demise / stillborn baby

            – profound injury or death in children, teens or young adults

            – life-threatening injury / death of a young spouse or young parent

                 (as you can note from these first three examples, these circumstances seem

                  to be disproportionately tragic based on the patient’s age)

            – situations where suicide or attempted suicide is a factor

            – visits where family members are having to make “end-of-life” decisions and / or

                        decisions about withdrawal of life support

            – any of these examples are immediately worsened if you happen to have a 

                       personal relationship with the patient and / or family

Because of my medical and ministry experience, I know how vital competent, timely and compassionate pastoral care can be in these tragic situations. I have a keen desire to help train up pastors of all ages in developing effective strategies for shepherding families through some of the worst days of their life. That desire led me to write this article.

Some Practical Considerations

When you receive the assignment to go to a hospital for any type of visit, try to find out as much information as you can about the situation. If the challenge seems too overwhelming or too difficult for your level of experience, don’t hesitate to ask an older or more experienced team member to accompany you during the visit. In the healthcare world, I heard this old saying more than a few times, “I’ll be available if you need me, but if you call, it’s a sign of weakness.” I’m sure that in medical residency programs this might be a common saying, but it has no place in a pastoral call setting. In my opinion, not asking for help is the true sign of weakness (and pride / over-confidence).

As you drive to the hospital, pray for the patient and their family. Also pray for yourself – for wisdom, discernment, compassion and strength. (On behalf of all of my healthcare sisters and brothers out there, please pray for them as well.) Most likely you are going to be going into the emergency department waiting area or one of the critical care waiting areas (ICU, CCU, PICU, NICU, etc.) As you first encounter the family members, you want to figure out who’s leading them? A parent or spouse or sibling? Are there 2-3 family members or friends? Are there 20-30? I always feel like it’s an advantage if you know the family, though it’s obviously more difficult if you are close friends with them. If you’ve never met any of the family before, you want to identify yourself and let them know why you are there. I always want to determine as quickly as possible – is the situation as bad as I had been told? Is it worse or better? Above all else, my over-riding objective is simply, “WHAT CAN I DO FOR THIS FAMILY RIGHT NOW?”

This next topic is purely my opinion, so take it for what it’s worth. Personally, I feel it is important to remain strong and composed as much as possible. I want to be a calm, steadying force for this family. I want to be clear and rational and that’s harder to do when you’re highly emotional. There may well be some hysteria around them….they certainly don’t need that from their pastor. Have I shed tears with a family? Yes. Both as a healthcare professional and as a pastor. You certainly don’t want to be an “emotionless robot”. On the other hand, you don’t want to be a “blubbering mess” either.

Show up & Shut up

This next bit of advice is the most important thing that I’ll write, so please read carefully. As we all know, most pastors work with words to some degree. Preachers / teachers work with words a lot. Unfortunately, some pastors feel like they need to say something about everything. I get that. They want to try to make things better. Despite those well intentions, in these tragic, life- altering, “worst day of my life” moments, there are no adequate words. No matter how much education you have amassed or how gifted of communicator you are, YOU DO NOT HAVE THE WORDS!! Dr. Billy Graham didn’t have the words. There are no words that will ease the burden and pain and disbelief and shock that this family is trying to manage.

Here’s something to consider. In the midst of this earthshaking tragedy, a person’s ability to hear and process is profoundly disrupted. It doesn’t matter if they’re the CEO of a Fortune 500 company or highly educated or a military officer. If their loved one’s life is in the balance, they experience the same shock and grief and disbelief as anyone else. I experienced this over and over in my neurosurgery days. If we were treating someone with a life-threatening condition, I would go out into the E.D. waiting area to brief them. I would try to be simple, direct and kind in my exchange with them, offering as much hope as I dared to offer. Invariably, when I’d drop by the ICU 2 hours later to check in on our patient, those very same family members would ask the very same questions that were asked and answered in the emergency department just a short time earlier. It’s like our previous conversation never happened. Early in my career, this would greatly frustrate me. However, as I matured, had children of my own, etc., I began to understand more and more. They were simply overwhelmed. The events around them were surreal; a nightmare; literally, the worst day of their life.

For this reason, I wouldn’t advise trying to share multiple Bible verses with them. Same issue… they’re not ready for that. What I often said as a pastor was simply this, “I’m so sorry that you guys are having to go through this right now. I just want you to know that I’m here / the church is here and we want to help out in any way that we can.”  Certainly, a brief prayer may be appropriate in this moment.  Those limited words, your presence and a warm embrace or hand-shake are more than enough to convey your concern for them in this moment. Best advice – show up & shut up.

Timeline / “Back Story”

If the hospitalization goes on for several days or even weeks, the family will be more capable of hearing and processing more appropriately. This is a much more appropriate time to share a favorite Bible verse that may be very helpful and comforting for them. Part of the pastor’s job is to try to discern what the family needs in the ensuing days. One thing to consider is the presence of (or lack of) any significant “back story”. It’s important to know if the teenage daughter who was critically injured in a car wreck was running to the grocery store because her mom insisted that she go. I can tell you that if that’s the case, the mom is going to be beating herself up with guilt. You may find out that the young man who attempted suicide had a huge fight with his father the day before. No wonder the dad is quiet, sullen, distant. No wonder the mom is angry and harsh with the dad.  Sometimes there’s no significant “back story”, but if there is one, it’s nice to know and understand, as it may affect the family dynamics in major ways.  Obviously, you will want to continue to follow-up with them regularly. I would leave a card and my cell number and ask them to “keep me in the loop”. I would tell them, “I’ll be back on Thursday morning at 9:00.” (It’s probably a good idea to check in by phone or text before going back out, just to make sure things haven’t changed significantly.)  Take them some coffee and donuts. Plan to shepherd them for the long haul.

Managing Church Member’s Expectations 

This is especially important when the patient / family are members of a large, urban church. It is impossible for the Senior Pastor of a church of several thousand members to make very many hospital visits. Sometimes it’s even difficult for junior staff members to visit as frequently as they would like. Regardless of the size of the church, some people feel slighted if anyone other than the Sr. Pastor calls on them. In this circumstance, we would tell them, “Pastor Bob knows about your situation. He wanted me to tell you that he – as well as others on the staff – is praying for you every day.” Also, the geographical logistics may be an issue. If you are located in a large urban metroplex, the regional trauma center may be a long distance from the church offices. If you are in a small, rural church, the regional trauma center may be hours away. As we all know, church members can be a little fussy and messy, especially when they are under enormous stress. They were probably somewhat fussy and messy before this terrible event in their life. Show them grace and mercy….that’s what we’re called to do.

Visiting After Surgery or Other Procedures

My two general rules were this: 1.) Be aware of WHEN to visit  2.) Be aware of HOW LONG to visit.

In the first 24 hours after a major surgery, very few patients want a bunch of well-meaning visitors. In my medical days, it used to amaze / infuriate me when I’d go in to check on one of our post-op patients just a few hours after a major procedure and find a room full of jabbering, loud family and friends. For goodness sake, people need rest after such a difficult, painful procedure. I always wait for at least 24 hours before a personal visit. It’s perfectly appropriate to call one of the family members to send your regards and check on the patient before you actually go there in person. In fact, I would often call before driving out just to make sure they were up for a visit even 24 hours post-op. If they are available, then I always keep the visit to under 10 minutes. I maybe chat about the surgery for a couple of minutes; I ask them if they need anything; I ask to pray with them; then I say my goodbyes and make my way out. Same principle as above, they don’t need to try to entertain the pastor (or anyone else for that matter) when they feel miserable. There will be plenty of time for longer visits once their recovery has progressed. Another point to consider, if they are receiving IV narcotic pain meds, they may very well not even remember your visit anyway!

My one exception to the “keep it brief” rule is if the patient is alone in life without family or friends nearby. If they seem up for a longer visit, I might stay 15-20 minutes just to afford them some company and emotional support.

If the post-op patient is in the ICU, on a ventilator, I rarely go back to their room. I can’t do anything to comfort that person; most likely, they are heavily sedated and unaware of anything going on around them anyway. I can certainly pray for them, but at this moment, I’m mostly there for the family and that’s who I want to focus on in the waiting room or cafeteria, etc.

End of Life Pastoral Care

These are amongst the most challenging situations that any pastor will face. I feel very comfortable in these circumstances, simply because of my long experience with such matters in the neurosurgery world. Obviously, I don’t enjoy them, but I feel very prepared to offer support and comfort to a family in this terrible position.

Brain Death

Before going any further into this discussion, I feel it’s important to give a basic review of “brain death”.  This is a medical determination that is made based upon a thorough medical exam looking for any signs of neurologic function – response to painful stimuli, pupillary response, absence of all cranial nerve function, etc. Fortunately, in modern critical care medicine, there is an even better test to determine brain viability….the cerebral blood flow test. This is a test done to determine if there is any oxygenated blood flow to the brain. The absence of cerebral blood flow, along with ominous neurologic dysfunction can help modern-day clinicians to determine that the brain has been irreversibly harmed without any chance for meaningful recovery. Once the medical team makes the determination of “brain death” then the patient may be declared deceased.

Now, the patient may be connected to a ventilator, IV lines and all the other stuff. They still have artificially-supported heart & lung function, but technically, they are “dead”. When this situation develops, this determination of “brain death” is discussed with the family. Actually, it is probably more accurate to say that it is “confirmed” to the family. Most likely, the healthcare team has been slowly preparing the family for this terrible possibility before the clinical diagnosis is official, based on the exam and cerebral blood-flow study. “Brain death” doesn’t just sneak up on the healthcare team without any warning. Once the situation reaches this conclusion, there is a major consideration:

Did this person want to be an organ donor?

If so, then the patient is declared “dead” and the family has the opportunity to say their goodbyes at the bedside. Then, the local organ donation organization is called in to evaluate the patient and then help coordinate the successful harvest of organs and tissue. This may take several days to make all the necessary arrangements. It has been my experience that the organ donation coordinators do a splendid job of letting the family know what’s happening and what to expect as far as a timeline for the procedure. (By the way, if you are dealing with a family who has elected to allow for this life-giving  decision, please affirm and encourage them. It is an incredibly courageous decision and can be life-changing for those who will eventually receive the organs.) Additionally, the organ donation organizations often send the family follow-up letters to let them know who received their loved-one’s organs. I believe this can help offer some degree of closure for a family enduring this terrible life event. Keep in mind, not every “brain death” patient is a good candidate for organ donation. If their demise was due to an overwhelming infection (sepsis) or they died from any other infectious diesease, they may not be a candidate for organ transplant. The donation team will decide this.

Other Considerations

There may be situations where the patient has severe, irreversible brain injury without hope for meaningful recovery, yet they don’t quite meet the criteria for “brain death”. Often, these type of devastating conditions will eventually progress to “brain death”, but not always. However, the timeline for this progression can take days or even weeks. This is especially true for patients who were in good health prior to the insult….youth, no major heart disease, lung disease, etc. Some unfortunate patients fail to progress to “brain death” and medically stabilize with the ability to have spontaneous respirations – i.e.: they can breathe on their own without ventilator assistance. This condition if often referred to as “a persistent vegetative state”. They are alive in the strictest sense, but there is no meaningful brain function – they are unable to speak or respond or do anything to care for themselves. This is a profoundly difficult situation for any family to endure. With respect to my own personal opinion, I’ve always said, “there are some things worse than dying”, and the “persistent vegetative state” is one of those things. Now, we’ve all read where someone miraculously awakens from a prolonged comatose state, even after months or years. It can happen, but it is incredibly rare, and is considered news-worthy when it does occur. Typically, these patients are confined to a long-term nursing facility for the rest of their lives.

There are also situations where the disease or traumatic injury causes profound brain dysfunction, without the ability of the patient to breathe on their own. Therefore, they are still dependent on a ventilator to breathe for them. They are not yet “officially” brain dead. These are circumstances where the family may want to consider withdrawal of life support. These circumstances may also arise if the patient if very old and had significant pre-existing health issues. Often, the family will say things like, “I know that my dad would not want to live like this. He told me many times.”

Family Considerations

There are several things that I want to know:

            – How well is the family prepared for this?

            – Is this an acute medical crisis that’s less than 72 hours old? Is this a long-standing

                        health problem that’s been weeks or months in the making?

            – What are the family dynamics like?

                        – Best Case: everyone knows what PawPaw’s final wishes were and all 

                              agree on  how to proceed

                        – Worst Case: nobody really knows what PawPaw’s final wishes were

                        – Very Worst Case: the family doesn’t know the final wishes and don’t agree 

                              on what to do next

            – There are medical-legal considerations that the hospital will have to know – is 

                          there a  designated Medical Power of Attorney and is that person here? 

                          (I would strongly advise any pastor to stay out of these decisions,

                          that’s not your duty!)

 

Withdrawal of Life Support

Families must realize that this is NOT a decision that they can make on their own, without major input from the medical team. In fact, the consideration to withdraw life-sustaining efforts will almost always be initiated by the healthcare team. As someone who’s been on that team, it’s important to understand that these kind of considerations are not entered into lightly. The team will only bring this option to the family if they feel that there is absolutely, 100% chance that the patient will not be able to have meaningful recovery and, in fact, is mostly likely going to ultimately succumb to this devastating medical condition.

These situations may occur in an acute care setting or maybe in a Hospice environment. Regardless, these decisions are often gut-wrenching for the family. They always have one important question in the back of their mind, the so-called “elephant in the room” :

            “Am I doing the right thing?  Is this really what my loved one would have wanted?”

              (In other words, am I responsible for “killing” my loved one?)

I learned years ago that an appropriate response to such questions is something like this, “You are not responsible for the death of your loved one. This terrible injury or illness is what will end your loved one’s life, not your decision!! You may be changing the timeline a little bit, but you ARE NOT changing the ultimate outcome. This was going to happen eventually anyway.”

Here is a very critical consideration for any pastor or church staff or volunteer who may be with this family. You must not make the decision for the family! That’s not your decision. Also, you could be putting yourself or your church in a serious liability position if the family comes back later and says, “We didn’t really want to do that, but you told us to do it.”

You can certainly acknowledge that it’s a difficult, painful decision, but you cannot offer your own personal preferences or input into their considerations. It they decide that they want their loved one to become an organ donor, you can certainly support that courageous decision and encourage them that this is the only “good thing” that can come from this tragedy. Their heroic decision can have an incredible, even miraculous impact on the lives of multiple organ donation recipients and their families.

This last thought is something most pastors would never consider, but it’s very real in these difficult situations. If the decision is made to “turn off” the ventilator or remove the breathing tube in the ICU, it is OK for the family to not stay in the room as their loved one passes away. It’s not uncommon for the patient to have some “agonal respirations” or have some non- purposeful twitching in the final moments of life. I’ve watched many people actually die and it’s never easy, even for a veteran healthcare provider. You might imagine how hard it would be if that patient was a loved one. Now, I recognize that many people will never leave that bedside, not matter what. I think that they somehow believe that if they leave the room in that moment that they are somehow a bad, uncaring spouse, child, brother/sister, parent, etc. It is perfectly fine to sit out in the hall or the waiting room until the “end” is final. I am always afraid that their last memories of their loved one will not be pleasant, which can lead to guilt, etc.

Dealing With Guilt

It is very common for a person or a family to struggle with guilt after making this very “grown-up” decision. As a pastor for this family, you must be vigilant for this response. It may not show up for days or weeks after the fact, but it’s incredibly common. I try to encourage them, “We should have guilt when we’ve done something wrong. In this situation, you did nothing wrong.”

I don’t fully understand it, but over the years I’ve seen that many people are prone to “grab hold of guilt that’s not theirs to own”. If their grief or guilt is profound and unrelenting, you may need to refer them to a trusted source for grief counseling in the coming weeks.

In circumstances when the person / family member who is left behind has been a long-term or primary care-giver, it is very common for that person to have an inner sense of “relief” after the passing of the patient. This is a response that nobody wants to talk about. Nobody wants to  recognize a sense of “relief”. Before my mother passed away several years ago, my father was her primary care-giver for the last 18-24 months of her life. He was in his early 80’s and had his own health concerns to deal with. It was not easy for him. I talked to my dad a few weeks after my mom passed away about this very thing….feeling a sense of “relief” after her passing. “Hey Dad, I know we haven’t talked about this, but there’s something I just wanted to mention to you. I didn’t know is you were aware, but it’s really common for people like you to feel some ‘sense of relief’ after all you’ve been through in the past couple of years. I know that nobody likes to discuss this, but I wanted to share this with you, because I love you and don’t want you to be burdened by unnecessary guilt.” Yes, it was difficult and a bit awkward, but, in fact, he did experience that and yes, he felt tremendous guilt for feeling that way. I tried to encourage him that such a response is completely normal and doesn’t mean he was an awful human being / an uncommitted spouse. I tried to explain to him that the “relief” wasn’t due to her death, it was due to the fact that taking care of her was difficult and challenging. He seemed to understand and told one of my sisters later on that he needed to hear that. I would encourage any pastor or other staff member who walks with a church member through this kind of journey to simply be aware of this common phenomenon and have the courage and boldness to address it as you give meaningful follow-up care and shepherd a family member in this situation.

Final Thoughts

This article is intended to provide a framework for thinking about these very difficult ministry duties. This is not intended to be the end-all-be-all on this topic. There are so many different circumstances and variables that a book could easily be written on this subject. Even then, there will still be odd situations that no one could anticipate. Sometimes you just have to figure it out on the fly. I hope that I have given you some insight into the considerations from the healthcare perspective, as well as some ideas on helping to shepherd your church members through these unimaginably difficult circumstances.

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About the Author

Rich Jones was a neurosurgical nurse practitioner for 30 years. 12 years ago, he retired with his Speech Therapist wife, and they moved to Lubbock, TX, to launch the Hillside Christian Church campus. He served as the XP there for 9 years and his wife was Guest Services Director. Since retiring, they’ve moved to DFW to be near kids and grands 18 mos. ago. We started attending Compass Christian Church 18 mos. ago. We jumped in and started volunteering right away. He recently began a new staff position at Compass Christian Church as a volunteer Care Pastor. He wants to serve his church and its members to help train our staff in doing some of the “hard” things in ministry – funerals, making hard hospital calls like end-of-life, withdrawal of life support, etc. He developed an in-service training for the staff in Lubbock on the topic of making “hard” hospital visits. Through his busy neurosurgery practice, he dealt with a lot of death and dying and tragedy… almost on a weekly basis. He has a unique skill set and a unique perspective to help any pastor called upon to make that kind of challenging hospital visit. 

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