I have been talking with several people who are involved with an end of life process. Their questions are the same ones I ask myself when my loved ones are transitioning from bodily life. “Am I doing the right thing for him?” “If my sister could talk, do you think she would want us keep the ventilator and feeding tube going?” “I’m so tired but I’m afraid to leave him because, what if he dies while I’m out?” “Will the morphine kill mom if we give her too much?” “Why didn’t we talk about this before NOW?” “Why can’t my family just get on the same page with me about these care choices?” The questions are the same ones.
At the end of life, communication can get complicated. These kinds of questions can give rise to emotionally charged debate that is not always pretty, peaceful or calm. These debates can actually turn into bedside power plays, stone cold silences, or loud screaming matches. I have learned that at hospice time, or at any time really, there are no wrong moves and everyone is doing their best. Even if it looks just awful, everyone is doing their best. Even if you want to blame others for their arrogance, ignorance, or unseemly behavior, everyone is doing their best. They may not be behaving the way you would like them to, but they are doing their best. They may not think that you are doing your best and may tell you so, loudly or quietly. You then get to respond, loudly or quietly. Like I said, even if it looks just awful, everyone is doing their best and the questions are the same ones.
Here in the western world, we tend to push death into the closet. When it is upon us, emotions and opinions can escalate to unbelievable heights. Disagreements, overwhelm and confusion about decision-making mixed with physical exhaustion is a recipe for disaster.When I was beginning to study hospice philosophy, I had an idealistic picture of families gathered around the bedside in a sunny room with melodious music playing; everyone holding hands and sharing the love as their dear one easily slips from bodily life to whatever is next. What a shocker to realize that this is only what happens on television. In truth, I have seen frustration, resentment, grandstanding, and bickering during end of life; most often it is not the dying person doing any of this.
Because we are human, we have human feelings, thoughts, and opinions; because we are individuals, these will vary greatly among us. How to care for a dying loved one can offer the greatest opportunity for negotiation and compromise that a family will ever face. This is especially true if the dying person has not made their wishes clear and/or is not able to speak their wishes. If everyone is not in total alignment about what is happening for the dying person the resultant situation can become awkward, upsetting, or even volatile. Strong differing opinions about religious and spiritual orientation, personal care methods, legal or financial situations will offer more of a challenge. Fear of death, suffering, pain or the unknown will pretty much always increase the symptoms of stress for both care givers and the one transitioning.
In The Four Agreements by Don Miguel Ruiz it is suggested that one adopt these attitudes for a peaceful life:
- Be impeccable with your word
- Don’t make assumptions
- Always do your best
- Don’t take it personally
Family care givers may benefit greatly from practicing these ideas. Use care to speak your true feelings, thoughts and opinions calmly in “I” statements, such as “I feel scared about this decision and I don’t know what to do.” or “I think we need a second opinion.” Don’t assume to know what others are feeling or thinking; ask: “Are you feeling angry about the choice we made?” “Do you think we need to call the nurse?”
According to Marshall Rosenberg, human needs for connection, assurance, and comfort are universal. Family care givers in a hospice situation may not feel these needs are being met. After all, someone they are connected to is transforming before their eyes. Assurance is elusive and there are many questions that reach far beyond the immediate moment. When needs are not met, any one of us can become judgmental. In that situation, notice it, forgive yourself and look for the unmet need underling the judgment. Is it validation, support, comfort or connection that is needed? Is it something practical; like eating a meal sitting down or having someone else do that errand? Often when we judge others, it is because we have an unmet need. It is not even about them, but rather about what we need to feel whole, well and connected. While it might be a stretch given family history to ‘see the best’ in others, being willing to try can diffuse a potentially challenging moment. If you can become the one to affirm that everyone is doing their best, no matter how it looks, you will set the stage for forgiveness and peaceful solutions.
When others tell you that you are not at your best, don’t take it personally! The accusation is an indicator of where they are in the moment; giving you a clue as to their unmet needs. They are doing the best they can with the skills they have; and in that moment they cannot grasp another way to be or do. They are fielding the same questions that may be plaguing you. Become willing to do your best; you will then model this for others. Even if you think you did something wrong; let it go, turn it over. The long and short of it is, at end of life or any time really, there are no wrong moves; the questions are the same ones and everyone is doing their best.