DELAYING OR DENYING HOSPICE CARE TAKES AWAY QUALITY TIME SPEND WITH LOVED ONES

I met a patient who had been suffering from kidney failure and was on dialysis for over 10 years.  John (not his real name), 54, was confined to the hospital because of gall bladder problem and was scheduled for surgery.  Unfortunately, significant complications occurred after the procedure. He was brought to the ICU and was put on a ventilator. A week later, John recovered and regained his consciousness, though frail.  A few days after his tube was removed, he developed pneumonia and was put on antibiotics.

Doctors talked to John and his wife about his state of health and prognosis.  They spoke of the importance of having an advance directive, to which John agreed to have.  However, his wife did not think he needed it. She said, John, I will do everything to bring you back to health.  Even though John wanted to sign an advance directive, he was overridden with his wife’s wishes for him.  They took it aside and continued with healthcare interventions.  After a few more procedures, John verbalized that he was already tired and felt extremely exhausted and  “wanted to rest.”  However, his wife was persistent in pursuing hospitalization and treatment.  She was not ready to let him go, “John if you love me, we should fight for this together. I need you in my life,”  to which John agreed.

The following week, John was discharged to a rehabilitation unit. It looked like there was a glimmer hope.  John was slowly eating and doing some mild form of therapy.  However, one evening, John suddenly experienced a sharp pain on his back. He was brought back to the hospital due to an accumulation of fluids in his lungs and sepsis.  He was again confined to the ICU and was put on a ventilator.

The doctors explained to his wife that the human body can only handle so much. “We  treat one thing, and another thing comes up.”  There are always complications. Based on his conditions and prognosis, He could benefit from a hospice or comfort care rather than persistent curative care. However, his wife was determined to pursue further treatment.

Doctors moved on to remove the fluid in John’s lungs and performed other procedures. After the surgery, John was back to the ICU.  He remained unconscious as dialysis was continued at the bedside.  His wife and family members occasionally came for a visit.  Some families would drive from out of state and stay for days struggling to see and attend to him.  It was challenging to have a meaningful interaction given the environment and busyness in the ICU.

Like John, many patients might have been suffering needlessly for months. Health crises, hospital visits, futile procedures, and ICU confinement can become characteristically regular activities toward the end of life.  These can be a very distressing experience not only for patients but also their families who attend to them.

In John’s case, the family was more focused on the so-called “treatment at all cost.” They were in a busy hospital setting, rather than being in an environment where they can talk, reminisce the past, talk with a professional staff or pray with a chaplain to prepare themselves spiritually and emotionally for end of life.

John died after three weeks in the ICU with ventilator and other contraptions. It would have been a different experience for John, and his family had they tried to fully understand his condition, communicate with each other and their doctors with openness. They might have opted for comfort rather than aggressive care.

According to Dr. Diane Meier, a palliative and geriatrics care practitioner at Yale University Hospital, many of the most unbearable symptoms like pain, extreme discomfort, tiredness, and difficulty of breathing may decrease substantially in hospice care.  Some evidence “suggests that hospice patients live just as long as or even longer than similarly ill patients who are not in hospice.  Hospice is not a one-way street.” [1]

However, many people are still apprehensive that if they choose hospice, it means that they are already embracing death. Many do not feel ready for this situation. And who does? But on the contrary, hospice patients can leave hospice care at any time if their condition stabilizes and may want to pursue back to curative treatments.

Hospice care does not help people die quickly, it helps people die naturally and comfortably as much as possible in their own time.  It also provides family quality time to spend with their loved ones.

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[1] Consumer Reports, The Washington Post (December 10, 2017): Waiting too Long to Use Hospice Care Can Make Suffering at End-of-Life Worse.

Cover photo compliments of PEXELS.com

 

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