As an ICU doctor, I often care for patients who can no longer speak for themselves. Whether their illness came on gradually or occurred without warning, they lie in bed without a voice. Their family, if they have one, must take on the role of surrogate decision-makers. This is a tremendous responsibility and can cause upheaval and rifts in even the most functional of families.
Here are some common patterns I have witnessed that compromise the patient’s well-being.
- “The sister from the coast” This situation is usually precipitated by a person who does not live close to the patient and may not even be very involved in her life. Propelled by guilt or anxiety or simply out of touch, this person flies in to “save the day” or, in other words, to keep the patient alive at all costs. This often puts the local family in an uncomfortable situation. For months or even years, they may have engaged in conversation with the patient, cared for the patient, communicated with the healthcare team; ultimately coming to a carefully considered decision which may involve withholding or withdrawing life-prolonging treatments. Their efforts are suddenly thrown off course by the latecomer. And even the most committed person might feel as if he is just “pulling the plug”, giving up, not caring enough, when confronted by someone pushing for continued treatment. When death is approaching, it is a time for careful reflection, not for a unidimensional push to prolong life regardless of all other considerations. The “sister from the coast,” while well-intentioned, will ultimately go back to the coast. Decisions must come from a deep rooted understanding and consideration of the patient’s preferences, not just an urgency to prolong life at all costs.
- “I don’t want to be responsible for grandma’s death.” When a person on life support is not expected to get better—either to ever wake up or to return to a lifestyle that would be acceptable to her—families respond in a variety of ways. One response I have observed is families acknowledging that their loved one would not want to live a life on machines, yet not feeling comfortable requesting that life support be discontinued. They are overwhelmed by the idea that their decision could result in their loved one’s death, and can’t imagine living with that feeling for the rest of their lives. I understand this sentiment completely, but I always ask these families to consider the alternative. Are they truly ready to commit their loved one to a life they did not want? A life that would most certainly involve pain, suffering, and loneliness.
- Old family narratives, like sibling rivalry or trauma. The crisis of dying can re-ignite dynamics that may have lain dormant for decades. A traumatized child who suffered at the hands of an abusive parent can lose perspective on what needs to get done. An estranged child, especially if feeling guilty about having left the family, may be unable to let the parent go, stuck in a last attempt to demonstrate his love. Siblings may fall back on childhood behavior—competing to express their dedication to their parents—pursuing maximal life support at all cost and forgetting to consider their parent’s unique set of preferences and values.
- Co-dependence and fear of loneliness. A child or spouse might simply not be willing to let go, hoping that the doctors can bring the person back to life.
- Money. Unfortunately, as in most other aspects of our society, money plays a part in dying too. Sometimes family members are making decisions based on financial considerations, even greed. When fighting over any sort of inheritance, attention can be diverted from the person lying in the bed, whose needs should always come first.
In my experience each of these patterns is more likely to occur when the hard work of planning has not been done. The medical literature shows us that the passing of a loved one can cause a host of issues in those still living. Data demonstrates increased risk for the bereaved of medical problems, anxiety and depression, even financial ruin. And while I have not seen research on this, I imagine that those families who have endured such conflicts can suffer disruption for many years to come.
Yet a small amount of preparation can make a big difference, even save a family.(…) Read Full Article Here