A Deeper Dive into the Interventions: Finding the Divine/The Divine Finding us
Finding the Diving in the midst of suffering is often predicated by finding the patient’s source of spiritual strength. These two interventions can provide a solid foundation upon which the patient may build their faith as they face end of life. As in all interventions, the Chaplain must be certain that these are congruent with the patient’s desire for spiritual support of this nature. In this article we are simply calling to the Chaplains’ attention the fact that these two interventions are but 2 of 21 interventions to be employed in the spiritual caregiving dynamic.
Perhaps a review of how the Chaplain arrives at this stage of the Spiritual Plan of Care. First, relationship is built through trust. The Chaplain will gain some sense of the Spiritual Concern the patient exudes and confirms or clarifies that with the patient. From that point, a goal or expected outcome is identified by the patient as the Chaplain skillfully converses with the patient. At that point, the Chaplain identifies which interventions will benefit the patient the most. This sounds robotic, but in the dynamic of the pastoral care encounter it is far from that. Further, the Chaplain has no agenda to force the patient to identify a goal or expected outcome. In fact, those terms are never used. It simply is what the patient would like to accomplish in his or her life…no arm-twisting or spiritual abuse ever!
What follows is a case study. I would ask that you put on your Chaplain hat and participate with this family. What would you do? Would you use either of these interventions?
One of the most used terms in describing hospice care is ‘journey’. We join our patients on their journey. We make the journey with them… and so forth. What exactly are we talking about when we use the work ‘journey’?
A journey is a trek from one place to another. Is it too graphic to state that the hospice journey is a trek from wellness to illness to death? Or from living in health to living in the shadow of death? What then can the hospice Chaplain do to assist this sojourner? Traveling, for me, has often been fraught with taking a wrong turn, getting lost, losing time, going extra miles when I could have saved time by taking the right route. Somehow, I see these characteristics of my travels, as holding true with patients. Could we not liken taking a detour, losing time, traveling extra miles on the hospice journey to denial, emotional distress, anticipatory grief? And, then, can we truly place a value on these very human responses as a waste of time or a delay in the journey? I think not because they are a real part of the journey and the stories told in these junctures are vital to understanding the life of the patient. In the American Book of Living and Dying, one of the key issues of life is ‘meaning.’ What gave the patient meaning and significance in days of health and vitality is no longer the same. Meaning making at the end-of-life something altogether different. The wise Chaplain can explore this with his or her patients and family caregivers. What follows is the story of a husband, wife, and two adult daughters as they made their hospice journey. As you read, pick out the moments when the Chaplain could have provided an Intervention to explore with the patient or his spouse issues of meaning. Also, ask yourself what difference could the Chaplain have made with this family.
My husband Tom was 48 when he was diagnosed with pancreatic cancer. He had a very successful home based business and he was determined that his diagnosis would not slow him down. We had two children together, Carrie who was 20 and Kevin who was 21. He had a "successful" surgery in the month after his diagnosis in June, but by July mets to the liver were discovered so he began a series of chemo treatments in hopes of slowing the disease progression down - but nothing seemed to work at all. In the meantime, Tom and I tried to lead as "normal" a life as possible. We both still worked, took hikes, dinners out, a few short trips, and in general just kept hoping that something would finally work. He continued to decline and the disease to progress, but Tom was amazingly strong and rarely let the disease get to him. In fact, it now seems that he wasn't letting the doctors or me and our kids know how much the disease was taking over. He was always optimistic that another treatment would slow the disease progression down. But nothing did slow it down.
Initially we had some hypothetical discussions about the end. Early in Tom's illness he started talking about cremation and how he wanted to have his remains divided between the two kids for them to each take to some special place. For example, he wanted my son - who is an extreme skier - to throw the remains off a high ski jump somewhere out west. We tried to go along with him, though we didn't even want to talk about the end since we were all so optimistic that something was going to come along to "cure" him from the cancer. Well, over the next several months, my daughter (who is in college) got emails from Tom with his latest thoughts on where he should end up. The last email she received on this subject showed that Tom had changed his mind about his remains being divided - that suddenly didn't seem right to him - but he didn't provide us with where he did want to be. But the vast majority of the time he denied the seriousness of his disease. I really believe that he was so determined not to let the disease win that he denied and denied that it had advanced so far, to the point that it caught him by surprise as much as us.
The month of December he was feeling lousy. But he was still doing a little work out of the basement office but feeling very tired and having trouble eating He was still looking forward to a new clinical trial that was to start the first week of January We had an appointment on December 22nd to see the oncologist. During the appointment it was made clear that the doctor thought things were going downhill quickly. He told him that at this point he could only treat his symptoms and gave him an IV that afternoon. The doctor told me he expected Tom had about 2 weeks left. We talked very little about it on the way home.
That evening he was very tired and depressed. Carrie pointed out to him that the winter solstice was occurring and that the moon was the brightest and closest to the earth as it had been for 100 years. So Tom made an extra effort and he and I went out on the back deck and looked at the moon before he went to bed.
The next morning Tom just barely woke up. He was disoriented and couldn't communicate. Several times I found him sitting on the side of the tub in the bathroom when I left the room just for a minute. My understanding is that the disorientation was caused by decreased blood flow to the brain as the body began to slow down. One thing we explored initially was whether the disorientation was due to brain mets. His doctor ordered Decadron for him to reduce swelling caused by brain tumors if there were any. Unfortunately it didn't help.
Within hours he had slipped into a coma. We hurriedly got hospice care and the hospice nurse suggested that we might receive some final gifts from Tom. My kids and I were in total shock. Although we hadn't talked about it much we knew the disease was progressing, and the end was coming, but we never expected it to go so fast. The nurse also told us that hearing was the last sense to go so that Tom would be able to hear anything we said. So we talked to Tom and told him how much we loved him for hours and hours. I hope he heard us...in the early hours of his coma he did respond a little bit, but we were unable to understand him.
The next day, Christmas Eve, Tom's mother was scheduled to arrive at 10:30p.m. The hospice nurse suggested he would hold on until she arrived. But that was not meant to be. Tom died at 7:30 p.m. None of us had any last words from him, in fact, we never had the chance to acknowledge together that he was in fact, not going to beat this disease. I have felt cheated of the final days that I expected to have when we would share our love for each other and plan to meet in a better place.
I have a lot of problems with the lack of closure with Tom. While we had gradually acknowledged to each other that he might not make it, we'd never really accepted it or talked about what it meant. I always thought we'd have a period of time when he was in hospice care when we would talk more and say our good-byes. While I, and my kids-said lots of good-byes and I love yous while he was in a coma, he was never able to communicate with us again. I still replay those last few days over and over and wonder how we didn't know he was so close to the end and wonder if he knew? I keep thinking that I might run across a good-bye note or something like that, but I don't think there is one.
Although the suddenness of Tom's death has been very disturbing, I have finally come to see this as a gift. He did not experience a long period of pain and hopelessness. Dying on Christmas Eve, as sad and difficult as that is going to make future Christmas Eves, is probably much better than had it been Christmas Day. Waiting for his mother to arrive was probably too difficult for him, it would have made it harder for him to let go-when he was clearly ready to do so. And he and I did share the winter solstice the night before he went into his coma.
Final gifts come in different forms. They aren't always the last minute moments of lucidity when good-byes are said. We sure didn't get that, but I have come to feel that we received other messages in other ways.
For now, we have put Tom's remains in a basket, wrapped it in the cozy blanket he always used on the sofa, and surrounded it with mementos. Since we are so sure that Tom’s spirit is in heaven and with us, we are able to disassociate that box from the real Tom, but at the same time, use it as a place to remind us of some of our times together.
Carrie had a hard time deciding whether to go back to school in January. She wasn't sure if she would be able to concentrate on school, but at the moment she is highly motivated as she is studying cell biology and lining up some lab work in a cancer research project. "Funny" how her dad's disease has helped her find the direction she wants to concentrate on in school. Eleven years ago, my dad died of leukemia and a side effect was that my sister decided to go to medical school at age 32!
I went back to work in mid-January and that keeps me really busy and distracted. But that isn't enough. I try to figure out what I'm supposed to do with my life now that my much loved husband is gone. He and I did just about everything together and we were just getting to the point of planning our retirement and now I don't have a clue what to do.
copyright 2000 Susan Peticolas Lahti