End of Life Issues and Family Disagreement

End of LifeI treat a fair number of elderly patients over many years who are now cognitively impaired and in the last stages of their life. Most of the times they live independently in their homes or apartments with the assistance of an aide while their children and closest relatives live elsewhere. End of life issues and discussions are an integral part of my practice in this group of patients. Having a living will and or a medical directive, appointing a health care surrogate for the future and discussing resuscitation status are complex but necessary discussions to have. I try to have these discussions with the patient and their life partner while they are still competent and cognitively intact. I try and review it with the designated health care surrogate if and when their mental status deteriorates. In most cases, when the clinical situation is appropriate for instituting palliative care or hospice care , and the patient when cognitively intact had indicated that this is the direction they wanted to go under these circumstances, these same families have tremendous difficulty in moving forward and following their loved ones plans. It is almost always the absentee children care takers of the Baby Boomer generation , who are now the health care surrogates, who will not institute their loved ones wishes and insist on continuing aggressive and acute care when expected changes in their loved ones health occur. There is always great discord within their families resulting in difficulty knowing who actually is calling the shots especially when all the children have a power of attorney document.

This situation is not unique to my practice. I am interviewed by potential new patients to join my practice all the time. Not a week goes by without a parade marching in of an elderly cognitively impaired patient, their aide, their child or children and sometimes a minimally impaired elderly life partner. The story is usually the same. Mom or Dad has been seeing “Dr. X” for so many years but he has them on too many medicines. They are lethargic. They do not want to socialize. In many cases the children have actually stopped medications based on their internet research, without discussing it with the doctor first. They are looking to change doctors. In most of these cases when I research the patient’s care and records, they have seen a board certified neurologist and geriatric psychiatrist and the diagnosis of cognitive impairment is accurate and appropriate. In most cases the trial of medications is appropriate as well and the care has been superb. In many cases the patient has an end of life terminal disease with a life expectancy less than a year whether it be a malignancy or not. The absentee children just are not able to accept that mom and dad are at the end of the life cycle and have asked for palliative and end of life care. I am sure that the children of some of my patients are seeking care elsewhere as well because they are not ready to accept an end of life diagnosis. This rarely if ever occurs with patients who live with their loved ones who provide hands on care on a daily basis. These hands on caregivers see the deterioration of their loved ones quality of life, understand what is occurring and how their loved one wished to be cared for in this situation.

We talk about death with dignity and living with a high quality of life. No physician or loved one wishes to accelerate the demise of a patient or family member. It is however; very difficult to honor the patient’s wishes when their absentee baby boomer children are not on the same page with their wishes and have not addressed the issues with mom and dad while they are competent and able to do so.

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