Tuesday, March 15, 2016

When Surrogates Disagree on Care & Treatment



 by Vikranta Sharma MD

Leela* was a 93-year-old female who had lived a long, happy and fulfilled life. She had been married to the love of her life for 55 years, had 3 children and many grand children. She had a long and satisfying career in health care and was very sure of her wishes about death and dying till she developed progressive Alzheimer’s dementia which became very advanced by age 93. She lived at home with her daughter Jennie, her caregiver and power of attorney for past 3 years. Unfortunately Jennie herself was recovering from a stroke she suffered last year. It left her with expressive aphasia and inability to drive. 

Her grand daughter Sue was the new caregiver for both of them for the past 12 months.

Leela was declining, she had developed difficulty swallowing due to the progressive neuromuscular weakness that comes with advanced Alzheimer’s dementia, she needed full assistance in bathing, toileting dressing as well as feeding, her speech sparse and meaningless. Essentially, she was bed bound. She lay curled up in a fetal position most of the time. Recently she had started spitting out the pills that were put in her mouth and refused to be fed.


She was admitted with a second bout of aspiration pneumonia and altered sensorium. She was treated with antibiotics and hydrated briefly, without any significant improvement in her functional ability. She could barely open her eyes to command and then quietly close them again.

When asked about her wishes, Sue told me that her grandma was a registered nurse and never wanted to have tube feeds and wished to go naturally without tubes or heroic efforts when the time came. She had seen too many people suffer with unnecessary care. Jennie nodded in agreement and she and I signed the POLST form that makes these wishes an order.  There was hushed mention of a distant son who had not seen her in the past few years, but Jennie said she would inform him as well. Leela started home hospice after obtaining consents from the daughter.

When Surrogates Disagree
Two weeks later, an angry son called hospice and asked his mother to be taken off the hospice, he called 911 and demanded her to be taken to ER, he wanted her hydrated, treated with antibiotics and possibly started on PEG tube feeds, as he felt that this amounted to starving her.
He still wanted no CPR or intubation, but did not agree with hospice philosophy.

The patient was taken off hospice and after several family meetings a PEG tube was placed and she was accepted in a nursing home. Medicare would now pay for her room and board due to the newly placed G tube.

Decisions Undone
In America, surrogates often override the decision of an incapacitated relative, regarding end of life care. Various reasons involved include religious beliefs, personality conflicts, misunderstandings and financial reasons.

POLST is meant to be a legal document to help convert a patients known wishes into physician orders. However, families make decision collectively and may influence the behavior of the surrogate.  Sometimes that decision may go against the wishes of the patient.

The Faults in our System
It is an outrage that  our healthcare system pays for doing more to the patient than doing something for the patient that the patient actually wished for! Medicare will not cover the stay of a dying patient in a nursing home but will cover the stay if they have a procedure  like PEG tube that automatically qualifies them for a hundred days in the nursing home.
 
Leela passed away few months after PEG tube feeds were started, she developed diarrhea after being in the nursing home, where she died with decubitus ulcers and sepsis finally. At least she didn't die hungry.

*Names and details have been changed to protect the privacy of patients and family.
Vikranta Sharma is a hospice medical director at the Visiting Nurse Association Health Group in New Jersey.  

Join us this week on Wednesday, 9pm EST, 6pm PST for #hpm chat for a discussion on this topic and more!

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 3/16/2016 - 9p ET/ 6p PT
Host: Vikranta Sharma MD Follow her on Twitter


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