Friday, July 1, 2016
A couple of years ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying." Having knowledge of our assumptions is a first step, but what do we do with that knowledge? Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.
This article is the fifth in a series of articles where I take each assumption from the original article and explore the concept in greater depth to include implications and possible interventions. In my last article, I wrote about the assumption People don’t want to be alone when they die.
Here is our next assumption: Family matters will get resolved.
A bestselling book by Dr. Ira Byock, The Four Things That Matter Most, suggests that at the end of the day, or at the end of life, it all boils down to these simple thoughts:
“Please forgive me,”
“I forgive you,”
and “I love you.”
The book asserts that we can have powerful emotional healing within our relationships if we remember what matters. It is one of my favorite books on end of life.
As a hospice social worker, I have been witness to some powerful reconciliations at end of life: a daughter who forgave her mom for alcoholism, a son who forgave his dad for the divorce, siblings hugging it out.
We sometimes even see the patient’s physical symptoms resolve. “Terminal restlessness” may go away when that long estranged loved one finally visits. We see the unconscious patient’s brow relax. The effect of resolution in the patient is physically apparent and they die with a peaceful expression on their face.
Sadly, though, we have to acknowledge and remember that sometimes the reconciliation doesn’t happen. The daughter will never go to the nursing home to visit her dying mother. The brothers will not put aside their differences despite a shared love for their dying father. The patient will not forgive the grandson who stole from her.
Unresolved conflict can be difficult for some hospice and palliative staff to accept. We know how much better they will feel if they can just let go of past hurts. We know that if they hold grudges, they might hold it for the rest of their lives. Is there something we can do or say to help them understand?
Maybe. Maybe not. We have to remember it is not our family and we don’t have the complete picture. We should not go overboard trying to set up a reunion or reconciliation because of our own idealized view of relationships. It is easy for us to get caught up in the situation if we are repeatedly reminded by the patient or primary caregiver of the desire for contact with another family member. Remember, it takes two to reconcile.
A patient or other family member may even ask staff to make a phone call to the estranged family member on their behalf. They might hope that a staff member’s notification will be taken more seriously. They might hope we have a way with persuasion where they did not.
This intervening is not advisable. In social work, we call this triangulation. Triangulation means we are getting in the middle of things and taking sides. We have to let go of the romanticized notion of our personal role in helping to resolve a 30-year old dispute at the deathbed.
Suggested Intervention: Assist family members with talking through how to reconnect to a loved one, however, avoid interjecting yourself in the middle of the situation. You can help them with phrases on how to reconnect.
We may not be the only ones who are hoping to see a reconciliation. There are times where a family member who is close to the patient is hoping the patient will resolve issues with another family member. Sometimes it is not a matter of an interpersonal dispute, but rather the primary caregiver is disappointed that others are not visiting patient. This is especially painful for the hopeful one because the patient is dying. This is that other family member's last chance to make things right. The high expectations one family member has of another can cause frustration for all parties involved.
Suggested Intervention: Provide emotional support to family members who are distressed by non-involvement of other family members. If appropriate, encourage them to express their feelings directly to these other family members.
There may be times where we are in contact with the estranged family member. For example, when the Power of Attorney (POA) of a patient in a facility does not visit the patient. They have their reasons for not wanting to be there. If we do our part to inform the POA that the patient is dying, and they still choose not to visit, we have to accept their decision.
Suggested Intervention: Allow family to stay un-involved if they choose. Provide supportive listening if they feel they want to explain why they are estranged.
Although we may not personally have experienced extreme family dynamics such as abuse that led to estrangement, we have to acknowledge there are situations that warrant a relative’s choices. It is sometimes impossible to fully understand the contempt a family member has for the patient when what we see is a sweet, kind, and vulnerable person. We do not have all the pieces to the puzzle. We may not have any idea what was experienced in the relationship. Even if we disagree with the reason for the estrangement, we have to be mindful to be accepting of the feelings a family member has.
Suggested Intervention: Self-reflect on our own feelings about non-reconciliation.
The most memorable advice I was given as a new social worker was to remember the acronym: NATO - Not Attached To Outcome. The best support we can provide to patients and families is to provide loving kindness without attachment to how things “should” be in their lives and relationships.
Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW