When you do not have an advance directive, someone else will decide on your behalf when you are incapable of making healthcare decisions for yourself. There is no assurance that the decisions made are aligned with your wishes or preferences. If family members are involved, they might have different opinions in handling your care. A lack of guidance and wisdom on their part will lead to chaos and misunderstanding. Let me share with you this story:
One busy day, I was assigned by my supervisor to handle a patient who needed continuous care. The patient was John (not his real name), 88 years old. He was in critical condition. He was admitted due to cardio-vascular accident or stroke. He also presented other serious medical problems. John was placed on life-sustaining treatments, which doctors believe were prolonging his suffering. There was no consensus among his family on how to proceed with his care. His five children were divided on his medical interventions, which made the care for John more challenging.
Upon reviewing John’s history, I found out that he served in the military as a Navy engineer and was once assigned to my country of origin, the Philippines. He later worked in the construction business upon his retirement from military service to support his children, two boys, and three girls. John had established a good reputation in his field and in his community. He was successful in his career and lived a financially-stable and comfortable life. He and his wife were able to send all their children all the way through college. They were all working professionals with families of their own.
John was married to his wife of 55 years. Sadly, she suffered from Alzheimer’s disease two years before John had a stroke. She was transferred to a nursing home when John could no longer take care of her at home. John used to visit her almost every day. He would bring his packed lunch and would spend the whole day with her in the nursing home. He would also take the time to attend to other residents and volunteered at the facility’s activity department. John was well-loved by staff and residents.
I entered John’s room after reviewing his medical history. He was attached to a ventilator machine, feeding tube, IV fluids, and heart monitor. There were lights blinking all over his bed.
John’s condition deteriorated day after day even with aggressive treatments. His attending physicians had ruled out any possibility for recovery under normal circumstances using available treatments. He had other serious medical conditions apart from the stroke. A family case meeting was scheduled to discuss his condition and medical care.
John’s children flew in from different states. They all came to the hospital one day and surrounded their father on his bed. Their presence in that room would seem like a picture of compassion, support, and love. However, that encounter was tense. His children were divided on how to proceed with his medical care. Some of them wanted to remove the tubes and to stop all curative treatments, while others wanted them to be continued.
Despite John’s sufferings, the majority of his children decided to continue aggressive treatments and interventions.
There were many things that happened to John after the stroke incident. He had an aggressive CPR, which fractured his ribs. He underwent a procedure to open a blocked artery. He was on multiple medications to sustain his heart, lungs, and kidney functions. He had a systemic infection. As a side effect of the antibiotics, another normal flora in the body was also killed, leading to another infection called C-difficile, which made his stools watery. He had frequent bouts of diarrhea.
One morning, on John’s third week of confinement, I received a report from the outgoing shift that John died the night before in his room with contraptions attached to his body until the time of death. He died with nobody around. Not one of his children was present at his bedside when he took his last breath. John had received all sorts of treatments in his four-week stay in the hospital, until the moment he died.
I honestly thought that those heroic procedures and life-sustaining treatments were not what John desired. I do not want them for myself or for my loved ones either. However, when we are incapable of expressing our wishes, someone else will make decisions for us. They are often members of our families.
They are often carried away by their emotions. They may experience guilt for allowing their loved ones to die by foregoing treatments. They may also want to make up for unpleasant past experiences by doing everything at all costs for their loved ones. They may be unaware that their good intentions can cause undue burden and suffering for the patient.
It’s time to bring our family together and start a conversation on advance care planning. The right time to talk about end-of-life care is now. We may take advantage of any opportunity when we are together to celebrate important occasions, like birthdays, anniversaries, Christmas or Thanksgiving. We can convene the family after the occasion and talk about important life issues.
Cover Illustration compliments of PEXELS, https://www.pexels.com/photo/person-using-black-blood-pressure-monitor-905874/