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.

Emergency Encounters: Admirable

In this brief and simple encounter, the demeanor with which a woman told me what she needed, and why, made her admirable in my eyes.

She was in the ER for dental pain, a common complaint for those seeking drugs to sell or abuse.  The triage note said, "Needs antibiotics for dental procedure." Well, that was understandable. A lot of people don't have primary doctors and need these antibiotics.  Simple enough.

A woman in her mid-twenties sat up on the stretcher as I walked in the room.  She was attractive and yet looked to have a bit of a hard edge to her.  She had a pleasant smile.  While "confident" overstates her demeanor, she was certainly ready for the encounter.

"So what's going on?" I asked cheerfully.

"I have impacted wisdom teeth that I need to have removed, and my doctor told me I need to get antibiotics before I get it done."

"When is your appointment?" I asked.

"I don't have a dentist.  My teeth started bleeding so I have to get them taken care of."

"I can help you with that.  We have a dental clinic here at the hospital you can go to tomorrow."  She smiled gratefully.  "How did you find out about the problems with you teeth," I asked.

"I just got out of prison," she said.  She was not ashamed, but neither was she she proud or indifferent.  It was simply a fact. "The doctor there told me my wisdom teeth were impacted.  He said I needed to take antibiotics before getting them fixed."

"Why is that?" I asked.

"Because I got endocarditis from my previous IV drug use."  She had that same calm and simple demeanor, without any trace of perturbation or expectation.  She had done these things but she had recovered, repented, and started again.

She was a woman who had been through some very awful things, had come to terms with them, and talked to me about them as if she were telling me any sort of banal, yet necessary, detail of her life.

I very much admire her courage, and will think of her when I have to tell others about bad things in my past.  Even more so when I have to face up to something that needs to be addressed. We are made new in Christ.

Convincing Us that Dying by Starvation is Desirable

Food and water are essential for life; we know we will die without them.  If people cannot eat and drink safely and sufficiently because of frailty or illness, we do not leave them to die. We use a very simple and effective device known as a feeding tube.  PEG tube placement is a minor procedure involving a small incision that does not require general anesthesia; most anyone can have one placed.  They are a very effective means of providing nutrition to prevent weakness and death due to starvation, So why has the palliative care and hospice community put so much effort into convincing the rest or the medical community, caregivers, and society in general that feeding patients is optional, even extraordinary?

Dying of starvation is slow and unpleasant, taking up to two weeks to complete. So why does Compassion and Choices have a free booklet teaching people about VSED (Voluntarily Stopping Eating and Drinking)? Apparently people have gone through with this bizarre practice with the support of family and friends, as reported by The Daily Beast: The Nurse Coaching People Through Death by Starvation. Since they already promote the practice, why force doctors to get involved by advocating for doctor-prescribed suicide?

As the article's description states, "But what about terminally ill patients who live in states like New York, without a Death with Dignity law?" Compassion and Choices is all about suicide, regardless of prognosis.  The article goes on to say:

According to the medical literature, as well as Schwarz’s experience, most terminally ill patients die within 10 days of starting their fast. But they go into comas much earlier, often within the first three days. The hunger usually subsides quickly, but thirst sometimes causes serious pain. Oral care and medications can help.

Often patients decide against self-dehydration after meeting with Schwarz. It just relieves their anxiety to know they won’t be utterly helpless against their diseases. It’s a psychiatric opiate.

The article then speaks about the "ethical" perspective.

Timothy Kirk, a medical ethics professor at the City University of New York, predicts that the major hospice and palliative-care organizations will issue public-policy statements on the procedure soon... clinicians could learn more about the best methods for alleviating pain, and get better at predicting how long the process will take for each patient.

He noted that so far, no one has broadly challenged the procedure on ethical grounds, except within certain religious communities, such as the Catholic Church.

Thank goodness for the Catholic Church!

In 2014, The Weekly Standard published an article, The Ethics of Food and Drink about legal challenges to force the medical and long-term care communities to participate in these suicides.  It notes that the withholding of spoon feeding is now appearing as an option on some advance directives.

This all makes feeding tubes look even more extraordinary, and more like a medical intervention rather than a simple means of keeping a patient well-nourished.  The medical literature wants to believe this as well.  We currently have no good prospective studies to determine how effective feeding tubes are, just common sense.

As a Medscape review article points out, "Although difficult to evaluate, on the basis of the available evidence, PEG placement does not seem to improve the quality of life in patients with dementia."  This is because PEG are placed after significant weight loss or drop in serum albumen levels. This latter condition indicates the person is already poorly nourished by the time the tube is placed, and is one of the most significant indicators of death.  In other words, the studies are comparing patients who get tubes (who are by definition malnourished to qualify for a tube) to those who did not get tubes (because they were not malnourished and so did not qualify for a tube.)  It's no wonder feeding tubes do not seem to be very effective!

No one has yet to compare patients with the same serum albumen levels by giving one group PEGs and other group hand feeding. As another 2015 clinical review states, no level I evidence (from a systematic review of all relevant randomized controlled trials) exist.  Most studies provide only level III evidence (from well-designed controlled trials without randomization, quasi-experimental.)  And yet, in the echo chamber of the medical literature, feeding tubes have become largely discouraged in patients with dementia.

This is no longer about good medical evidence, but about bad perceptions. We have gone from maybe feeding tubes don't give much benefit to fighting against their use to VSED.  While feeding tubes need to be considered for individual circumstance, we need to stop denying them without evidence to do so.  Maybe we will come to our senses and realize once again that food and drink are essential care and that VSED-by-proxy is another name for murder.

DNR Does NOT Mean Comfort Care Only

The screenshot above is from an interactive Medscape article, Applying End-of-Life Documents in the Real World.  As you can see, 81% correctly identified the Do Not Resuscitate (DNR) status from a POLST or Living Will.

76% of medical professionals interpreted DNR to also mean patients only want comfort care/end-of-life care.

In this type of healthcare climate, any kind of advance directive is risky to have as it is very likely to be over-interpreted such that patients are not receiving the care they desire.

The Medscape article was written by Dr. Ferdinando Mirarchi, the lead investigator of the The Realistic Interpretation of Advance Directives (TRIAD) studies, all of which demonstrate widespread over-interpretation of these orders throughout the medical system.

His suggestion: ask the patient!  He also advocates for a trial of treatment that can be withdrawn if there is no benefit after 24 to 48 hours--a far cry from talking patients out of treatments, a practice commonly promoted today.

Abort Millions for the Right to Abort One?

The November 4, 2015 edition of the Boston Globe published yet another Why I Had My Abortion story.  This is the current media trend in order to "normalize" abortion and generate some sense of pride about it. Sadly, most women I talk with in the emergency department have deep and long-lasting regrets.  In this article, too, the pain is palpable.

"We weighed every scrap of information in the context of our unique situation." Trish Karter writes.

Unique, indeed. After conceiving a son and a daughter through fertility treatments (no mention if this involved IVF in which she would have chosen to implant two children), she discovered her daughter had Trisomy 8.

Here are her reasons for aborting her daughter; note that none of them contain any certainties.

1. "In 1993, our doctors told us that while our unborn son was healthy, his twin sister might not make it to term and would probably not survive childhood."
• The abortion assured she didn't.
2. "I learned that her condition might cause a spontaneous loss of both babies."
• Or it might not. Keeping abortion legal means millions of babies could be killed in order to possibly increase her one son's chance of surviving.
3. "If born, she would most likely have devastating limitations and maladies."
• While Trish's baby had Trisomy 8, babies with another genetic abnormality, Trisomy 21 (also known as Downs Syndrome) are aborted 90% of the time.  This is likely a driving force behind keeping abortion legal for people like Trish.
4. "There were also unquantifiable threats to my health if we decided to try to bring both babies into the world."
• I am not sure what those would be apart from any other twin pregnancy.
5. "We would likely not have another opportunity to have a second child, since this pregnancy was the happy result of years of fertility treatments."
• Again, we will legally abort millions of babies, and accept that she could abort one, so she could have that particular baby?

Trish concludes with, "I don’t share our story now because it is unique; I share it because it isn’t." Many of the people who do share her story have conceived "abnormal" babies and were heartbroken to "have to" abort them.  Her story could very well have been about her two wonderful babies even though the doctors advised her to have an abortion.