What to do when you think it’s time to refuse further treatment

If you are the Guardian of the Person or the designated Health Care Representative for a person who is extremely mentally incapacitated, there may come a time that you may face that most dreadful of decisions. You may wonder whether to treat all new medical crises. The person you are responsible for may have advanced Alzheimers or other dementia, may be incapable of expressing themselves, or may be functionally incapable of interacting in a knowing way or performing any physical act without assistance. This is a delicate matter. There are intertwining considerations of law, bioethics and even religion, and a heavy burden is placed on the health care decision-maker.

These decisions aren’t necessarily restricted to the ones involving life-preserving measures like installation of a gastric feeding tube, pacemaker, or respirator (ventilator), or decisions about whether to embark on kidney dialysis or performing major surgery such as a liver transplant or non-laporoscopic heart valve replacement. You may be faced with decisions about whether to hospitalize an incapacitated  patient for a new medical problem when the patient already has advanced and debilitating congestive heart failure or has become severely impaired by numerous complications of diabetes such as peripheral neuropathy, or extreme vision impairment. You may be wrestling with whether to subject the patient to chemotherapy or radiation treatment for newly-diagnosed cancer.

It is important to have a frank conversation with the primary physician who coordinates the care for the patient. What should be the overall goal for care at this point? If the underlying chronic conditions will never get better and will certainly continue to get worse, is it time to just keep the patient comfortable and as pain free as possible in their bed, and avoid hospitalization? Anecdotally, I have been told by nurses who have years of experience with patients who have long-term advanced dementias that they observe patients experiencing  disassociation and disorientation  each time the patient is hospitalized, and they report that although the treatment stabilizes the patient  for a short time, there may be no no overall improvement in the underlying degenerating condition . The health care decision-maker often feels that their patient is suffering as s/he goes through a new round of  tests, tubes, needles  and exams. Yet there is a natural assumption that if a person has a degenerating condition which periodically flares into a medical emergency (such as congestive heart failure or COPD), each new episode should lead to hospital admission for acute care.

If your patient is living in a nursing home, have a frank discussion with the treatment team, especially the nurse and doctor who have who primary responsibility for the patient. I have attended such meetings with my clients over the years, and they are difficult but important. Ask about how to obtain a Do Not Hospitalize (DNH) order and what it would cover. For instance, a fracture may need to be set outside of the nursing home. Find out about the broad array of comfort treatment that can be provided within the nursing home such as IV antibiotics and oxygen. Ask the doctor about issuing a DNR (do not resuscitate) order in the chart.  Make sure that the patient is never sent to the hospital without your advance notice and consent. Make sure that the treatment personnel do not give the patient any legal forms to sign. And complete a green POLST form for the chart which sets out your wishes for the goals of the patient’s care.

For advice and advocacy in carrying out your role as surrogate medical decisionmaker, call us at ….732-382-6070

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