There can be few more challenging situations in a family than when a loved one’s health is deteriorating and it becomes clear that, while the end may not be in sight, it is definitely approaching. Working in the long term care industry, we see that, as you would imagine, very often. Families have very different reactions to this time, some want to deny the inevitable until it happens; others accept what is happening and use the time to say goodbye; still others walk away, unable to cope or unwilling to take part. Emotional reactions are, of course, as individual as we are.
What is most difficult, I think, are the situations in which family members cannot agree with one another and they argue about everything from course of treatment to choices that may impact their loved one’s comfort. It happens more often than you would think and, perhaps, more often than it should.
There are many reasons for this kind of disharmony as I am sure you can surmise. Some families have had difficult relationships and conflict for many years, some have differing personal or religious perspectives on end of life and the list goes on. Sadly, these conflicts can not only be intensified at these times of life transition, they can also become damaging for their entire family.
In many cases, we can sit with a family and help them talk through and understand each other’s position. We can help them put the needs of the dying person first and reframe the conversation, and the entire thought process, in terms of what that person needs or wants. Often just having the parties listen calmly to one another can help—but not always.
I remember being involved in a situation at a nursing home some years ago. The resident had two daughters and they were approaching their father’s decline from very opposite viewpoints. The father was receiving hospice services, meaning that he had a terminal diagnosis of six months or less to live and that his care was focused on comfort rather than treatment. The wife was the man’s health care proxy and had placed him on hospice and both daughters were aware. One accepted this and came frequently to sit with her father, talk with him and play some of his favorite music. She brought her children to visit and the family was often gathered at the bedside. The other daughter was insistent that her father could recover. She came daily at lunch time and would bring soup that she would try and feed to the man. Not only was she bringing thick and hearty soups to a man who could not swallow but he would turn his head to try and refuse, a refusal she did not want to accept.
Staff and the other family members were very concerned about this situation, concerned that he would choke and develop an aspiration pneumonia and concerned about the approach this daughter was taking. We had the whole family in for a meeting and discussed this, including the director of nursing, medical director and dietitian. The woman agreed to stop force feeding her father but was back at it on the following day. Finally, she was only allowed supervised visits with her dad and, once that began and she was able to see what was actually going on and stop trying to “cure” him, the situation improved. He died less than a week later.
What is the most common reason for these disputes to occur? It is the simplest one of all, that the loved one had not communicated their desires, wishes and preferences. These are not easy conversations, I know, but having that clarity can make all the difference. And beyond just conversation, it is key to commit those choices to writing. In New Jersey, we have a form called a POLST (called MOLST in some other states). That stands for Physician Orders for Life Sustaining Treatment. It is a document completed by the individual and a healthcare provider, often their physician, that gives them a chance to define their choices in many key areas. This is a legal document, far more effective than any living will that truly allows the person to decide what they want and don’t want— and puts it into a form that is clear and concrete.
End of life is a difficult time in all respects. Making our own wishes clear and known can help make it easier for our families and put choices where they belong—into the hands of the patient.