Today Dr. Chang referred Robert to hospice.
The black vomit of four months ago returned. When I asked him yesterday, Robert said that he felt fine, he just needed to “puke where he puts his head to lie down.” He threw up several times on his pillow, which made him feel better. His bedclothes were changed twice last night. Elysia is working the night shift this week. She is tired today.
Fatima, the lead nurse at Gardenia Place, told me that Robert has been eating less and asking for fewer of his beloved cups of coffee (always decaf, of course). He looked pale. When I visit, I take him on morning walks and he is normally quick to tan. Yesterday his skin was waxen, a creamy flesh tone with a slight yellowish tint.
First, palliative care
Some months earlier, when it became clear that I could no longer transport Robert to the clinic for routine care, I requested a referral to palliative care. Palliative care would allow Robert to live his best life without medical interventions meant to cure him. There is no cure for dementia and prolonging the life of the body when the mind is gone never made sense to me. We are so much more than our bodies; I do not believe we are ourselves without our minds.
Dr. Chang is Robert’s new primary care physician in the palliative care program. I reached out to her about the black vomit. She ordered lab tests and provided a referral to a traveling phlebotomy service. The phlebotomist visited Robert yesterday.
At 9:13 pm last night, while emptying the dishwasher and finishing up coffee prep for the morning, I received a call from Dr. O’Connor, the on-call doctor reading labs. Every call from the doctor’s office creates a knot in my throat. I answered the phone with trepidation.
Here’s what needs to happen
“Are you Mr. Berry’s wife?”
“Yes.”
“Mr. Berry is bleeding somewhere in his gastrointestinal tract. His hemoglobin was measured at 6.7. Normal for men is a minimum of 13.5. He needs to be seen in the ER immediately. He will be transfused with two units of blood and then admitted to the hospital. Tomorrow morning, he’ll be scheduled for an endoscopy. Robert will be placed under a general so he won’t feel anything during the procedure.”
“I’m not even sure how I can get Robert to the hospital. You do know that my husband has dementia, don’t you?”
“Yes. I can see that in his chart. You can book an ambulance for non-emergent transport.”
Trying to absorb this flurry of information, I quickly jumped to visions of Robert resisting placement on a stretcher for the non-emergent ambulance ride to the ER; Robert in a hospital bed in restraints to prevent him from pulling out his transfusion IV; Robert flailing, fighting to come out of anesthesia. And me standing by biting my fingernails hoping he’d recover without ending up more cognitively compromised by the experience. Already frail people often suffer additional cognitive decline following anesthesia.
Do you know us?
“And you understand that Robert has a DNR and a comfort care only POLST, right?”
“Oh, I didn’t see that. Let me look at his .” Pause.
“I don’t want him to be in pain.”
“The loss of blood doesn’t cause pain. He is not in pain.” Pause.
“I need to speak with my kids about what they think is appropriate.”
We have talked about the POLST and they are aware of it, but making a concrete decision about care for their father is very different than considering the possibilities in the abstract.
“You need to make a decision based on what Robert would want.”
Fundamentally, I disagree with this. Yes, in an ideal world, we would always honor our loved one’s wishes, but Robert and I never had an explicit conversation about “what do you want me to do if you lose your mind.” Robert is no longer able to make any decisions. I’m in the driver’s seat.
This truth is the hardest of all. I don’t want to be responsible for a decision that may ultimately end another person’s life, my husband’s life. With rising panic, I scour my mind for an alternative to this discussion. There is none.
Easing his way
I so desperately wish that I could make Robert understand, that we could have this conversation now. Our journey to the end is lonely; I want to ease Robert’s way.
Following my conversation with Dr. O’Connor, shaking, I dialed my daughter’s number.
“Are you still up, honey? Can we talk?”
“Yes, Mom. What’s up?”
“It’s about your dad. His hemoglobin is really low. The on-call doctor reading his test results thinks we need to take him to the ER right now.”
I shared Robert’s test results with Maddie and what the doctor thought were the appropriate next steps.
“The doctor was doing what she’s supposed to do; save the patient at all costs. But she made me feel bad. She wasn’t aware of Robert’s POLST, but when I pointed it out, she still seemed to think we should be taking extreme measures. Taking those steps would be torture for your dad.”
“I think you’re right, Mom. Going to the ER would not be good for Dad. You have a care plan in place. Follow the care plan. All the interventions the on-call doctor suggested aren’t in Dad’s care plan. It would be very hard on him to be hospitalized. It would be hard on you. And what would it change? The doctor said Dad is not in pain.”
“Thank you, honey. I need to figure out what to do next. I’ll talk to you tomorrow.”
Bile rose in my throat. I didn’t trust myself to speak. Surely any words coming out of my mouth would be misconstrued. The only thing I could manage was to put my thoughts in writing. At 11:30 last night, I sent a message to Dr. Chang through Robert’s online healthcare portal.
Here’s what we’re actually going to do
. . . . .
Dear Dr. Chang,
I hope you are doing well.
The results of Robert’s blood test show that he is severely anemic. He is bleeding somewhere in his GI tract. Dr. O’Connor suggested a variety of interventions. I have decided that the interventions don’t make sense for Robert. Instead, this is how I would like to handle Robert’s disease moving forward.
– Prescribe medication to minimize Robert’s nausea.
– I do not want Robert to be prescribed drugs to arrest the GI bleed. I’ve been assured he is not in pain.
– He will not go to the ER.
– No blood transfusions.
– No endoscopy.
I believe a referral to hospice is appropriate at this point. Let me know what you think and what else I need to do to facilitate this change.
. . . . .
I received this reply from Dr. Chang this morning.
. . . . .
Dear Sharon,
I think hospice is a good plan. There is nothing you need to do. I will complete the referral and call you today to explain the process in more detail.
Take care,
Dr. Chang
. . . . .
I’m not ready
I sat heavily on the surface of my bed, careful not to rumple Robert’s side.
We have tripped into the next phase of Robert’s disease. I am not emotionally prepared. How can I be? I am making decisions now that I never wanted to make.
On the wall next to my side of the bed are photos of Robert with each of the kids when they were very young. In one, 6-year-old Maddie poses with Robert in front of a bright magenta bougainvillea at her after-school program in San Francisco. She was a tiny person, all freckles and flyaway golden hair beaming with her Daddy. In the other, 4-year-old Jackson grins into the camera clutching a bag of donut holes from his favorite donut shop. Robert lightly touching his shoulder, looks down at his son with an affection so deep it seems too private to be captured in a photo.
I stare at the wall in disbelief. How can we be losing this man?
. . . . .
For a comprehensive discussion of the difference between palliative and hospice care, see the article here from the National Institute on Aging.