Reflections — November 2016
By Ana Leech, MD
Tex Med. 2016;112(11):56-61.
Editor's note: This is a reprint of a four-part series the Texas Medical Association originally published on its MeAndMyDoctor blog. Dr. Leech shared her family's experience caring for her father, who had a terminal illness. As a hospice and palliative medicine physician, Dr. Leech told her story from a personal and medical perspective.
Part I: A New Experience
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 on 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 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 to 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 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 that 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. As 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.
Part II: Making Choices
My mom doesn't know what hospice is. No one does unless he or she needs the services. In reality, even many doctors who refer patients to hospice don't really understand it. So it was no surprise that Mom rejected it when I first introduced the idea to her. Her first comment was "No, I want to take care of him at home."
But hospice wants her to take care of him at home. The whole system assumes that is what will happen. Hospice would help.
Dad is apparently more symptomatic than he leads on. Mom reports he is experiencing nausea, depression, fatigue, and insomnia. She manages with the medications he already has, but the situation is not optimal. I really can't be objective enough to help her, and I have a personal rule to never care for a loved one, particularly now. The hospice team would be able to manage all those symptoms so he feels better — if only my parents would agree to it.
Palliative and hospice care are relatively newly recognized in the world of medicine. The general population and much of the medical community are misinformed about the services and care we provide.
Palliative care is a medical specialty that concentrates on symptoms and quality of life. I like to say I am a "symptomatologist" and quality-of-life expert. The palliative care team is composed of doctors, nurses, chaplains, and social workers. They care for patients with serious illness, providing symptom relief. The team addresses physical as well as spiritual and emotional concerns. Patients can request palliative care when they have a serious illness and they wish to continue treatment plans.
Patients who have a palliative team helping them with their symptoms have been shown to be more satisfied with their care and sometimes live longer, even though they tend to stop active treatments sooner. Palliative care is provided alongside other traditional specialties, and insurance companies pay for the services just like they do for any other medical care.
Hospice is not a location but a service that is specific for patients in the last six months of life. Most patients on hospice are at home (or a nursing home if that is where they routinely live), and their families care for them. The hospice team, also made up of doctors, nurses, chaplains, and social workers, visits the patient on a regular basis to provide physical and emotional support. The team provides all the equipment, medications, and supplies the patient needs.
Patients on hospice are expected to decline and die within a few months, so trips to the hospital are not considered beneficial. Instead, the team comes to the patient when there is a problem.
Hospice has four levels of care:
- Routine: The patient is at home and his or her family provides the care, or the patient is in a nursing home and the family pays for the room and board charges. All medications, equipment, and supplies are provided. Nurses visit routinely and as needed to provide care.
- Respite: The patient is comfortable, but his or her family needs a break to go on vacation, get some sleep, etc. In this situation, the hospice company provides 24-hour care in a hospice facility for up to five days a month.
- Crisis care: The patient is not doing well, and symptoms are not managed, but the patient and family do not want to leave home. The hospice will place a nurse on site 24 hours a day for one to two days until symptoms improve. The nurse works even more closely with the team doctor during this time.
- Inpatient: The patient is not doing well, either very uncomfortable, in pain, short of breath, or with any other symptom that is not managed well at home. The patient can go to the hospice facility to get a higher level of care with 24-hour nursing care and daily physician visits. This is a short-term stay until symptoms are controlled.
The levels of care are fluid, and patients transfer from one to the other without difficulty. There is an on-call nurse available 24/7. Insurance usually pays for hospice — including medications needed for comfort — at 100 percent (at least Medicare does).
It has been a few weeks since this all started. Dad is physically okay but has declined mentally so much. His symptoms resemble Alzheimer's, and I can't imagine how difficult it must be for families of dementia patients. He is confused at times, paranoid, and forgetful. He ruminates on opportunities lost and can't remember all the good things he accomplished. It is so painful to watch him (and Mom) go through this.
Mom called this morning. It is getting harder to care for him. His thought processes make it very difficult, and he insists on driving, which is a terrible idea. On the phone, Mom was crying, something I have seen her do just a few times in my life. It hurts so much to live through this. I love Dad dearly and already miss him, but watching my parents suffer is worse than death. In a weird way, I feel that death would be comforting now.
The hospice team met with Mom later that afternoon. Because I hold medical power of attorney, I took care of the paperwork; in his current state, Dad is so paranoid he thinks we are trying to have him committed, which couldn't be further from the truth.
I am glad it is done. It hurts, but I am glad Mom is set up with help now. A doctor with experience caring for dying patients is in charge now. A whole team to support her through this and beyond is holding her up. I can be a daughter now and let the hospice team do the medical management while I concentrate on the emotional journey.
Part III: Time Is Short
Dad slept better his first night on hospice care. Mom had medications to give him, and she felt safer, knowing that help is just a phone call away now.
His health declined enough to sign up for hospice before his 80th birthday. I was hoping he would have his birthday first, but that was not to be. Regardless, he had a great time, and we were glad he was doing well enough to be aware of the party.
Although hospice patients are not homebound, my parents don't really leave the house much these days. Dad gets confused and doesn't remember where he is; plus, he doesn't want to be a passenger in the car. He wants to drive. And he really doesn't need to be behind the wheel anymore — for anyone's sake.
***
It gets harder every day. He is disoriented and sometimes forgets who Mom is. He is also obsessed with driving (which he has been doing since he was 12), and it creates a lot of problems for Mom. He tries to sneak the keys and then gets upset and throws tantrums when she won't let him drive. He is also fixated on cars, although that is not new. He looks out the window to make sure his car is still there. Last week, he insisted he owns three cars and that two are missing from the driveway. He thinks maybe Mom is hiding them from him.
He sleeps so much now. He basically wakes up to eat and goes back to sleep. This is better for Mom because when he is asleep she can rest.
I am not sure how much longer he has, but the person who raised me is gone. Just the shell of his body remains. It hurts so much. Last summer, my father was a robust man in his 70s, fully independent and gregarious. Today, he is unable to walk on his own and only says a few occasional words, which usually don't make sense. He is gone, but his body remains here to suffer and put my mom through the most difficult time of her life.
***
He has declined markedly in the past couple of days. He has what we call agitated delirium every night. I'm not sure if it is pain (physical or emotional) or if he is afraid to die. I know he has unfinished business: a book he wanted to publish, another business to start. I just wish we could convey to him that he has done his life's work so that he could let go.
Mom needs more help now; it is so difficult to take care of him like this. I think she should let the hospice people care for him in the inpatient unit, but she wants to take care of him at home. She feels it is her responsibility and that taking him there would be a failure on her part. She has done such a good job for the past couple of months, but he needs a higher level of care. We will work on crisis care, but if his symptoms don't improve, I really hope she will agree to the transfer. They both need to rest.
I can't stop crying — not because he is dying but because he is not. He is uncomfortable and miserable and can't die because he is suffering so much. He needs to be sedated. Maybe then he'll relax enough to let his soul fly.
***
He is actively dying now. It is crazy to know that he will be here only a few more hours. He has been here all my life, and now he'll be gone. I know enough to help Mom go through this and also enough to feel a weird pain that no one can feel. Being on both sides of the equation is a rather eerie feeling. I know what the nurse is thinking, but I am also his child, feeling what family feels. I so wish for God to be gentle with him and take him soon. May these final hours be just a few.
***
He showed some signs of dying but certainly not most. He was comfortable, and his symptoms were well-controlled by the crisis care nurses who came to his home to be there in his last hours. Then with minimal warning, he just stopped breathing. He let his soul go be with his mother and to wait for us until it is our turn.
Part IV: Moving On
He is gone. I gave him one more kiss, and now he is gone. I will never be able to see him again, put my arm around his back, or watch him make silly faces with his dentures.
I feel honored and privileged to have been the medical point of contact. Somehow I had the opportunity to understand what was going on better than the other members of my family. As both his daughter and a palliative care and hospice physician, I had access to information and a level of understanding that no one else did. I knew what was going on more than the doctors because they don't routinely care for patients at the end of life (and don't like to acknowledge it when they do), and I knew more than my family because I had more information.
I think this is one of the most special privileges doctors have, and this time it means a lot more because it gave me a special bond with my dad during his dying process. I feel that I started to process his death the day I saw the MRI images. After looking at those images and reviewing them with colleagues, I appreciated every time I saw him as the true gift that it was.
I am grateful that I had the insight and training to do some legacy work (creating memories and mementos for friends and family to remember a loved one by) when we still had time.
I have always had frank discussions with my children, so they seem to be coping well with his death, almost too mature for their age. The kids will always remember driving lessons (at 11 and 14) from him.
It seems like he is gone too soon. He still had things to do, but then again my husband wonders if my dad would have run out of things to do. I feel like I should have spent more time with him — like I didn't do enough to cherish his life. However, I did so many things with him even when I was young. Those memories will be with me forever.
The first few days after his death were rough. I felt numb. I could not believe I would never see him again. I spent a lot of time with my mom doing nothing, just letting the day go by. I am particularly lucky because all my coworkers are used to comforting people after the death of a loved one, so I have gotten an extra-large dose of love from every one of them.
The hospice team provides 13 months of bereavement after someone's death. I am glad they will be there to check in on my mom and one of my sisters and her children. For different reasons, they are all having a hard time with his death, and they can all use the extra support rendered by hospice. If they are still having difficulty after the first year, it is considered complicated grief, and they will be referred for more counseling. I am glad someone else will be making that decision.
He was cremated with no viewing, so getting to closure took some time. He did not want a pompous funeral because he always wanted to be enjoyed while alive. My dad was always a creative guy, so in his honor we tried to reinvent the funeral experience and had a progressive celebration of life composed of events ranging from the very formal to the very casual to allow everyone to say goodbye. I have always felt that final services are supposed to be about the deceased, not about cultural norms. Surely I learned that from him. His remains were placed in a crypt at the cemetery. We all went out for ice cream afterward.
As a complete coincidence, about a month after he died, my husband and I went on a road trip similar to those I went on with Dad when I was a child. It was bittersweet, but the experience helped me say goodbye while ensuring he lives on as I pass on to my children what he taught me. Hopefully, they will pass it on to their kids.
We live longer when people whose lives we touched remember us. He will always live in my heart.
Ana Leech, MD, is a Houston palliative care and hospice physician. She is the medical director of Memorial Hermann Hospice IPU and medical director of palliative medicine at Memorial Hermann Southwest.
November 2016 Texas Medicine Contents
Texas Medicine Main Page