7 assumptions about end of life care

The worst thing anyone ever said to me was, “You think you know everything, but let me tell you:  You don’t know jack!” I was six weeks into my social work internship at a hospice and it was my student supervisor who decided I needed an attitude adjustment. Needless to say, I didn’t stay there. I was angry and hurt for a long time but now I’ve come to realize that while his delivery was awful, the message was relevant.

It is now five years since my student supervisor told me that I didn’t know everything. I have to admit he was right. The most important thing I’ve learned from my work in hospice is “knowing” can be dangerous for hospice staff. We take a situation that seems similar to one we have seen before and we can fall into the trap of assuming the outcome will be the same. Our patients and families take what they think they know from media or prior experience and apply expectations. The following lessons have been taught to me by many people I have worked with.  The cases below highlight these assumptions and are composited from many experiences.

Assumption #1: If you have experienced a death, you know how death happens. I can recall a situation with a person who had no local family and so the private pay aides that took care of her were her “family.”  She had a terrible UTI and had chosen to not take antibiotics. Her doctor visited her at home and informed her it would be about three days before she died. When I went to visit, all of her aides were present. I had asked if they had been bedside before and they all said they had. They said they knew death and yet there was nervous energy in the room. After talking with them more I discovered why there was an unsettled feeling. The client was still alert and awake and this had contradicted the aides’ prior experiences and expectations of how people die.

Assumption #2: You’re supposed to be unconscious when you’re about to die. At least that is how the aides’ previous experiences had been. They were not used to a client who was fully awake, making jokes and quite feisty. I had this assumption too for a long time until experience showed this was not always true.

Assumption #3: Family will want to be with their loved one when they are dying. I’m sure we have all heard a fellow clinician telling an out of town relative, “You will want to get up here quickly, your mom is transitioning.”  I once heard that and cringed  because I had already had a conversation with the son where he said his last visit with his mom was good and that he didn’t think he would come up to see her in the facility until it came time to plan the funeral. I now make it a point to ask the question at admission and share the results with the hospice team. When given the permission to acknowledge their true feelings, family members are grateful to be able to admit it if they do not want to be present at a death.  Clearly it is still important to notify these family members when their loved one is actively dying, but in a way that does not pressure them into making a visit.

Assumption #4: People don’t want to be alone when they die. Some families sit vigil all night and all day and then patient dies when they briefly leave the room. After I ask a family member whether they want to be there during the dying process, I inform them there is a chance that they may not present at time of death. As a bereavement counselor, you see so many cases where people feel guilty for “not being there.”  It can be helpful to set the expectation early that dying is a private experience and the person may die when family and friends are not there. We discuss how their loved one may not be able to “let go” while they are there. This information can help caregivers to take the pressure off themselves.

Assumption #5: Family matters will get resolved. We have to let go of the romanticized notion of resolving 30-year-old disputes at the deathbed. This applies to patient relationships with family but also to relationships between other family members. Unresolved conflict can be difficult for some hospice staff to accept. We should not go overboard in trying to set up a reunion because of our own ideals. We have to remember it is not our family and we don’t have the complete picture.

Assumption #6:  The secrets to the universe will be revealed. I think the movie industry has contributed to the idea of deep revelation at the end of life. Some people just don’t go there. We need to set expectations with families that not everyone has a big reveal, a big insight or a big goodbye. I admit I’ve been guilty of this. A 99-year-old client set me straight.

Assumption #7: You should tell your loved one, “It’s okay to let go.” There is the common thought that sometimes patients need permission to go, but that is not always what is holding them back.  I’ve had hospice patients who tell me they are not afraid to die, but when they are actively dying they suddenly become fearful.  This fear can lead to patients “hanging on.”  Fear of the unknown can be a powerful motivator to stay alive.  If it is fear that is keeping a patient alive, telling them “it’s okay to let go” may just put unnecessary pressure on them to go before they are ready.  While hospice patients have known that their death is predicted, the actual reality of dying can be overwhelming to face.  It takes time to process … and sometimes permission to stay until they’re ready to go is really what’s needed.

The more I know about dying, the more I know that I don’t know.  But how well does one really want to get to know death anyways?

Lizzy Miles is a social worker who blogs at Pallimed.

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