Houston Palliative Care and Hospice Physician
Medical Director Memorial Hermann Hospice IPU
Medical Director of Palliative Medicine Memorial Hermann Southwest
Editor's Note: This is the first part in a series.
As a hospice and palliative medicine doctor, I talk the talk every day. I sit down with very ill patients and their families. I review the medical facts, talk with the medical team and help them figure out what their values are, and empower them to proceed in the right path for them.
It is my turn to walk the walk.
As the doctor in the family, my mom filters most of my parents’ medical needs through me, so I was not surprised when she called me a few weeks ago to ask for a neurologist. She was sure Dad had had a stroke. She described difficulty finding words and completing his thoughts. Since I hadn’t seen him recently I thought nothing of it and gave her the number of a neurologist friend I trust to care for him right.
The appointment with the neurologist was on a Friday; I was busy at work and didn’t worry about it until Mom called to say that he put MY dad on medication for dementia! Dementia is doctor talk for slow, progressive brain failure that always leads to death while causing suffering for years to both the patients and the families caring for them.
I was now on the roller coaster that families find themselves in and didn’t know it. I guess at least I had an idea of what was coming, but not having any personal experience made this all new at the same time.
I managed to get a little more information that night, which helped allay my fears mainly because an MRI (a test that uses magnets and radio waves to produce images of the brain) was ordered, and I could keep my mind off the possibility of dementia if I just delayed any intrusive thoughts until the results of the MRI were back. That was until my sister googled what the medication was and got my mind going on how life would be for the next 10-12 years if Dad really had dementia.
Of course, as it always works, the MRI was inconclusive, but at least it ruled out dementia by showing a large defect — a mass. Somehow that was a relief for all of us. A contrast MRI (in which a chemical agent is injected into the patient to make abnormalities more visible in the MRI images) was suggested to have a better idea of what was happening.
And that’s when it became time to honor Dad’s wishes and let him call the shots. I ask families to do this every day. It is my turn.
He refused any further studies. No more blood work or radiology studies. Biopsies and treatment were completely out of the question! Although I was not surprised by this, the neurologist was. He pleaded I convince him, force him if needed, to get the contrast MRI. This would be completely against his wishes and against what I preach every day!
I decided to spend the day away from work with him, doing things he would enjoy. A day to be his one daughter who “gets him.” The one who knows the car exhibit at the museum was something he would really enjoy — and is willing to go to it. During that day I sort of tried to talk him into the test, but I didn’t push. I am walking the walk after all.
But as a physician I know, in reality, the contrast MRI is not really needed. Something that looks like a mass is in his brain. Swelling is causing pressure and making his brain not work right. This is obviously not benign (whether it is cancer or not). The relatively quick onset of symptoms makes this likely to be a short-lived process. Treatment options at this age would only serve to torture him and at best prolong the suffering a little.
Trying to be a daughter instead of a doctor is very hard. I can think of prescriptions he needs to ensure his comfort. It is keeping me up at night knowing he does not have them yet. I want to get him settled. I need to make sure all legal documents are in order. It needs to be done before the pressure thwarts his mental capacity to do it. We are on a time crunch.
Of course, he is in complete denial, which makes some things impossible — like final estate planning. Since neither of my parents has a will, my mom and I decided to proceed with wills for both of them, as if nothing is wrong.
One of the hardest things to do has been explaining to everyone that he is not getting “worked up,” meaning we are not pushing treatment. I have to stand his ground and explain every single time that he does not want treatment, that the risk of complications is too high for his comfort level, and that we are letting nature take over. I am in the perfect position to be his advocate because I understand both worlds. I really feel for families who don’t have someone like me built in. They get pushed and shoved every which way modern medicine wants. I am glad he has me, as hard as it is for me. I am here to ensure his will be done.
This idea that there is nothing to do is so erroneous. There is so much to do. We have to enjoy time with him, eat chocolate, share a cocktail or two, and look at cool cars. We have to ensure his comfort, and provide symptom management and emotional support. We have to watch out for Mom, who is losing her life partner of more than 50 years. Whoever said there was nothing to do clearly does not understand how complicated and important end-of-life care is.
I love doing what I do. I like to say I rescue people from the hospital and give them the care they deserve. I have always felt compassion and empathy in my work, but now I am strangely in both worlds. Now, telling people time is short has a new meaning; seeing a developing bed ulcer hurts a little more; talking with families who are in a sort of limbo is that much harder. I still love what I do, and I hope that my dad gets the care I strive to deliver, but the job is a little more painful now.
When it comes to the end of life, I was raised to be pragmatic and accept that it comes to all. I was always told that birth itself was a death sentence. This is not something unexpected, yet I just feel like crying. My eyes fill with tears at random times, and it is hard to hold back. I am already missing him. I am deep into what we call anticipatory grief. It is awful.
My dad is dying.
He is going to need hospice care. He is doing well enough for now, and although he meets Medicare criteria for hospice, he would not welcome a nurse visiting him every week at this point. We will wait until his health declines enough that my mom needs help, or until he accepts what is happening, whichever comes first.
Dr. Leech is a Houston palliative care and hospice physician. She is medical director at Memorial Hermann Hospice IPU and medical director of palliative medicine at Memorial Hermann Southwest.