Recently I had a family whose mother was on hospice with us. When Isabel* had a sudden decline and became active her family gathered around the bedside and all started to say the things that families and caregivers – including hospice staff – feel that they need to say in order for the dying person to “let go”. They all said that they loved her and that they would be OK. They had out of town family come in and say good-bye in person and on the phone. They told her over and over again that it was OK for her to go. The priest gave last rites. This went on for well over a week.
Needless to say it was rough. The family came and went, said what they needed to say, and still Isabel seemed to hang on. There were a lot of thoughts and questions: “What haven’t we said? Is there someone that hasn’t said goodbye yet? Is she waiting to hear from someone? What are we missing? Why is she still here?”
My best response was, “I don’t know.”
The Power of Magical Thinking
Magical thinking is the idea that things that are not necessarily causally related somehow are because our own attribution of will or meaning to them: “the belief that one’s thoughts by themselves can bring about effects in the world or that thinking something corresponds with doing it.” It’s the basis of many superstitions and, at its worst, obsessive compulsive disorder.
There’s quite a bit of magical thinking that accompany illness, death and dying at times. A lot of it comes out in the grief process as bargaining or denial. This thinking is actually helpful in that it serves as a buffer for those processing traumatic, life-changing information. It’s also a way to consider options and think them through, even if they seem counterintuitive, impossible or counterproductive.
I bring up magical thinking here because I see that going on in the “why is she still here?” question described previously. Often that question is related to trying to find meaning in the situation. At other times though it reflects the idea that when someone is dying, when we say the “magic words” (like “it’s OK”) or do the right things that only then will the person die. In the same way that some believe that if we aren’t ready to die that death will somehow be held at bay, it is believed that if we are “ready” that death will swoop down and carry us off. Death becomes a matter of personal will, and in the same way that I can will myself to live if I wish, I can also will myself to die. Families and caregivers may feel that if a person is “lingering” it’s due to the dying person’s will – they want to be alive for some reason, and we must find out what it is and help resolve it so that their will changes and they will then – immediately – die in peace. This is magical thinking.
We Aren’t in Control
The truth of the matter is, I think, that we don’t have as much control of the dying process as we think we do. Dying is at it’s core a bodily process. Even if I am ready to die and others are ready for me to die, my body might not be. It is true that there are things that we need to say or do that will help the dying person be at peace and that this will ease any mental or spiritual anguish that is extending the dying process. However we need to recognize that as much as we need to say or do those things, that the person may not die the way we expect them to.
Part of this is, frankly, pushed by us in the hospice and medical field. It’s pushed because so many of us have had experiences where the son finally came in, the priest arrived, or the family said “it’s OK” and then shortly thereafter the person died peacefully. However we should not assume or encourage others to assume that those examples generalize universally.
Many believe that the patient is still completely in control of the process and that we shouldn’t push our own agenda of the right way or the right time to die. Social Worker Lizzy Miles writes of her own experience of this with a dying patient:
The chaplain, an aide, a few family members and I stood around the bed. The chaplain began to play music and the patient yelled out, “NO” several times. The patient continued to be in distress until we stopped the music and everyone left the room. She calmed down immediately. In hindsight we realized we had put pressure on her to die before she was ready. She died a few days later in the early hours of the morning with her favorite aide by her bedside.
I agree wholeheartedly that we cannot and should not push our own agenda regarding what needs to be done in a particular situation with a particular family. We all bring our own expectations about what a “good death” looks like and can unconsciously push that on others, or judge others when their idea of a good death doesn’t match our own. But I would also argue that just as we shouldn’t assume an agenda on our own, we also shouldn’t assume an agenda on behalf of the dying person.
“God doesn’t want them yet”
We need to remember that dying is a physical process as well as a spiritual and emotional one. These are all tied together of course, but we cannot discount the physical sphere in relation to the others. A person’s body still has the final word, I believe, regarding when it will die.
It can be helpful to see and reflect on this as chaplains with our families who are struggling with a lingering death. Yes it is important to give permission and say and do all the things that we feel need to be done, for the family as much as the dying person. But we need to divorce ourselves from the outcomes of these interventions. We may be saying or doing those things more for the benefit of the family – or ourselves – then for the dying. We need to be able to say “I don’t know” when asked why the person is still here and note gone. We can help find meaning when people are struggling with the question of “why?”, but also need to be open that we may never know why. It’s here where people of faith may struggle, especially when God’s meaning is elusive or even punitive.
Saying that “God has a plan” or “God doesn’t want him yet” may feel comforting to say, but may not feel comforting to those wondering what the heck God is doing. These sentences tend to shut people down rather than open them up. A better plan could be to ask the family, if they are struggling, if they see a purpose in it. If not, recognize that. To some finding meaning is of paramount importance, because “God does all things for a reason.” Encouraging open discussion, telling narratives about other times in life when meaning has been difficult, and being non-judgmental about what meaning they find, can help much more than songs sung to a heavy heart.
*not her real name