My cousin, Sonny, is facing an end of life journey with brain cancer. His symptoms are primarily loss of memory and confusion but he was lucid enough to make the decision to have surgery to biopsy and remove a portion of his tumor. The neurosurgeon had explained that because the tumor was growing into the brain tissue it would be impossible to totally remove it.

Long before the medical diagnosis, Sonny had informed the family that he would not be with them much longer. He has been very accepting of his condition and thankful that he had no pain. His desire and the desire of the family has been to keep him as comfortable as possible.

Unfortunately, the medical system has not supported this plan. Despite the surgeon’s recommendation for hospice care and the families statement to the rehabilitation center for no heroic care, Sonny has been subjected to many unwanted procedures.

For the symptom of blood in his urine he was rushed by ambulance back to the hospital in San Antonio, over 1 hour away. Once at the hospital, blood was drawn and he was sent back to the rehab center with no other treatment. He was sent again by ambulance back to the hospital 2 days later to have his sutures removed and be discharged by the surgeon.

Immediately after returning from seeing the surgeon, Sonny became agitated and was again rushed to a local hospital and then air flighted back to San Antonio after having an MRI done that showed possible bleeding on his brain. The family was never consulted on any of this but simply informed of what was being done.

Once back at the hospital it was determined that the blood was simply left over from the original surgery. The family had a scheduled meeting with hospice but all of these events caused them to move the meeting up and get Sonny out of the medical nightmare. As of today he will be coming home under hospice care and completely out of the traditional medical system.

The care Sonny has received from all the doctors and nurses has been spectacular but much of it has not been needed or wanted. I would guess that in the span of 3 days well over $50,000 has been charged to medicare for unwanted procedures that I would call defensive medicine. When Sonny became agitated at the rehab center and had to be subdued by the nurses, the manger, instead of comforting the horrified family, kept repeating that he had not fallen.

The lessons we have learned:

1. Make sure all the hospice paperwork is signed and hospice care is in place even before the patient comes home. Your wishes will mean nothing without this.
2. Make sure you have in hospital and out of hospital Do Not Resuscitate orders signed by the appropriate doctors. Your lawyer prepared medical power of attorney papers do not count once the patient is in the system. If you have these papers and an ambulance is called to your home you must have your papers in your hand when emergency persons arrive or they will resuscitate.
3. Understand that hospice care does not mean the patient has to be at home for the duration of treatment. If home care becomes too intense, respite stays at hospice approved care centers can be arranged. Hospice also has special hospital center strictly for the very last days if special 24 hour care is needed over what the family can provide.
4. Hospice provides all the equipment and medicines the patient needs and provides training for the family including how to administer medications that provide for pain relief and sedation.
5. End of life care planning should be done between the family with guidance from a doctor or hospice person. This plan should be well understood by all involved and revisited on a regular basis.

I believe we have the most incredible medical system for diagnosis and emergency care and by listening to the wishes of the patient, focusing on keeping cost down, and controlling defensive medicine practices we can have affordable care as well.

Madalyn