Wednesday, May 18, 2016

Walking the Walk: Making Choices

By Ana Leech, MD
Houston Palliative Care and Hospice Physician
Medical Director Memorial Hermann Hospice IPUMedical Director of Palliative Medicine Memorial Hermann Southwest

Editor’s Note: Physician Ana Leech, MD, shares her family’s experience caring for her father, who has a terminal illness. As a hospice and palliative medicine physician, Dr. Leech is able to tell her story from both a personal and medical perspective. This is the second part in a series. Read part one here.

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:
  1. 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.  
  1. 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.  
  1. 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.  
  1. 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 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.

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.

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