Undying Love The Palliative Care Deception

Much is being made of palliative care these days, especially in the doctor-assisted suicide debate.  Prominent palliative care specialists such as Ira Byock and former assisted-suicide advocate Diane Meier  strongly oppose such legislation in our new era of palliative care.

According to the Center to Advance Palliative Care (CAPC), headed by Dr. Meier, palliative care “is specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness,” and “is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.”

Palliative care is not hospice, as anyone in the field would tell you.  Here is a graphic from CAPC demonstrating the “old” and “new” models of care:

My step-father, Dick, had congestive heart failure, stage IV renal cancer in his lungs, and required dialysis.  His appetitie and sleep were poor and he had bouts of breathing difficulties, much of which was due to untreated clinical anxiety. But he still cared for himself, drove himself to dialysis, and received chemotherapy.  My mother had difficulty coordinating the different instructions from the nephrologist, oncologist, and cardiologist, which sometimes conflicted, none of whom addressed his symptoms.  I told her to ask about palliative care for him, since he was the perfect patient for such services based.  She received a resounding, “No,” from all the doctors.

This reaction truly confused me until I learned that under Medicare palliative care services are paid through hospice benefits.  In other words, Dick needed to go on hospice in order to receive palliative care.  Signing on to hospice means giving up all other treatments, the so-called “life-prolonging care” in the models above.  Without dialysis, Dick would die in a matter of days, so hospice was out of the question.

That “old” model of palliative care is not so old.  That makes the push for palliative care in reality a push to surrender life-sustaining treatments.  Beware of former assisted-suicide advocates turned palliative-care-specialists and the false hope they present.

Undying Love, Hope, and Communication

I received an early morning phone call from my aunt.

“Your mother is very upset. She doesn’t know what to do. You need to stop pressuring her about treatment. Dick is dying and the doctors told her he doesn’t need all these tests. You should not go down to visit today.”

Decision-making for caregivers has become a tremendous burden in the wake of physician-assisted suicide and cost-cutting measures. You don’t know who to trust. My mother was pushed to her limit and my aunt was frustrated watching it happen. I prayed I could give them peace.

“The hospitalists don’t know Dick that well.  We will talk to his oncologist who knows him and his condition far better.  He wanted the CT scan to start him on radiation treatments.”  All of this happened over the weekend when they could not easily reach the doctors they trusted and I was at work, so it all spiraled out of control. “Let me talk to the doctors directly and I won’t put any pressure on Mom.”  I said a prayer of thanks for these two tremendous women in my life.

When I arrived, Dick was dressed and the nurse was going over his discharge medications with Mom.  My aunt told me his oxygen level had dropped too low when he was walking with the physical therapist for him to go home.  Dick, meanwhile, could not wait to get back home.  A resident arrived at the door.

“His heart is in normal rhythm, his blood count is better after the transfusion, but he is still hypoxic (has low oxygen levels.)  Maybe he needs his effusion tapped.”

Dick has a collection of fluid in his lung lining caused by his lung tumors, and that fluid makes it harder to breathe.  The amount of fluid has been stable, and the resident said it still looked the same on x-ray, though he admitted that was not the best measure of it.  A tap is done to drain the fluid and make it easier to breathe.  He went to discuss it with the attending physician who came by soon after.

As it turned out, the hospitalist knew he was on home oxygen and so she presumed his oxygen saturation (a measure of oxygen in the blood) was below 88% without oxygen; he was at 91% now.  But he had not been using the oxygen, and his saturation was 97% at the oncologist’s office just before he was admitted.  “Maybe he needs a tap

During the conversation she mentioned my mom had been very upset that morning.  “That’s because a hospitalist over the weekend told her that they were not getting the CT scan because it wasn’t going to change his treatment. His oncologist plans to start radiation.”

“I was on over the weekend,” she said.  “I told her it wasn’t going to change his treatment while he was in the hospital.”

“That’s not what she heard.” I paused a moment and said with some sympathy, “Well, let that be a lesson learned.”

Dick went home with an additional appointment with is thoracic surgeon in two days to see if he needs his lung fluid drained, which can be done in the office.  His CT scan will be scheduled soon.

Thank you for your continued prayers.

Undying Love in the Hospital

The healthcare system has a very distinct line separating hospital care from outpatient care. Hospitals are expensive and so they are the main target of cost containment.  Here is where caregivers need to me the most vigilant.

They moved Dick out of the ICU after he received his most critical treatments–loading of the new anti-arrhythmia drug, a blood transfusion, and dialysis.  He was weak still but doing much better.

Two nights later Mom tells me they will not perform the CT scan to better image his brain lesions.  The hospitalist explained that he should not get radiation therapy so he did not need to have the CT.  I reminded Mom about our visit with the oncologist just before this admission.

“He said if he had brain lesions then he would need radiation, and I asked him if that would be too harsh. He said Dick would only get five treatments and about the most that would happen is that he would lose his hair.”

“Half of it is gone anyway,” my aunt quipped, giving us all a chuckle.

“But the hospitalist said that was before he had the heart arrhythmia,” Mom continued.

“But he doesn’t have an arrhythmia any more, and they gave him a medicine to keep it from coming back.”

“Well if it comes back then he said Dick would need a pacemaker.”  She told me that caused Dick to respond with some concern, but he is letter her make the decisions.  “We can worry about that when and if it even happens.  They are just trying to scare you out of treatment.  I’ll be down tomorrow to visit Dick and talk with the hospitalist myself.”

Hospitalists are doctors that care for patients only while they are hospitalized.  They change from shift to shift, even day to day.  They have no personal relationship with patients, nor do they have time to form any.  Patients do not get much information or input about their own care.  Since hospitals get paid a set amount of money from Medicare for a particular diagnosis, the less the hospital spends caring for a patient then the more money they earn.  And maybe that is why they are trying to talk Dick out of a CT scan.

Undying Love End of Life Care

Dick would commonly be thought of as my stepfather because he married my mother, but since they have only been married for nine years I consider him my mother’s husband.  He’s a wonderful man who is dying of renal cancer, and I am his healthcare proxy.

As a physician assistant and because I know Dick more as someone important to my mother rather than a father, my perspective on this process is somewhat unusual.  I have a medical perspective of what is happening, and he is an important figure in our family such that I have some emotional involvement but certainly not as deeply as I would with a parent who had raised me.

They live 35 miles from me and I drive there along a highway that makes getting there torturous at rush hour yet rather easy otherwise. While I have been advising my mother all along, this past month Dick’s health began to decline and she started to get overwhelmed.  I needed to meet with his doctors so I could introduce myself and find out from them what was happening.

Just as I have the Emergency Encounters series in which I write about my work in emergency medicine, I am starting this series, Undying Love, to write about end-of-life care-giving in today’s shifting medical climate.  Even in the short time I have been so actively involved, I have seen a lot.

Please pray for him and our family as I ask that the Holy Spirit allow these entries to bless other care-givers fighting to get medical treatment for their loved ones.