Mom had insisted on staying at an Assisted Living Facility (ALF) in the southern state near Dr. Sam, the doctor she depended upon. (See Sentinel Event: The Crisis That Changed Everything.) Yet, when she was hospitalized, Dr. Sam was not her doctor. He was in a group practice of 9 or 10 doctors. Dr. Sam was one of the most experienced physicians in this general practice. But, because of his experience and popularity, he was always busy. When his patients were hospitalized, one of the other (younger) physicians in that practice oversaw their care. I believe this physician – Dr. T – was the hospital physician for all the patients from that group practice.
Dr. T. spent most of his time either at the hospital or the rehab center connected to the hospital. He worked long hours from early in the morning until late in the evening. Once a patient from their group was admitted, he was the physician of record for them. This was a fairly large hospital with multiple floors and wings. He worked in all these locations – wherever one of the groups’ patients was staying.
Mom did not know Dr. T. and didn’t remember ever seeing him before. He was young and enthusiastic and believed he could deal with any problem. He was always upbeat no matter how tired he must have been. I believe he would have been a great physician for a young child or younger adult. I don’t think he was the best geriatric physician. I would have liked him to have a better insight into the quality of life – end of life – issues a 90-year-old would want to consider.
Starting with the very first day I was there, doctors were asking me to sign “informed consent” forms for various procedures. Each form explained the risks and benefits, but it was hard for me to take it all in – in context with mom’s current condition and prognosis. For one thing, I had no clear idea of either her condition or her prognosis and couldn’t get the doctors to spell it out for me. How could I give “informed consent” when I wasn’t really “informed” about the implications of the procedure?
I got the feeling the doctors really didn’t want me to ask so many questions. I felt they would have preferred that I just sign the consents. One was for a catheter. Others were to insert IVs for nutrition, blood transfusions, etc. Then a big one seemed to be a “Central Line” to allow several IV lines to go in through one “central line” at her neck. It was supposed to eliminate the need for other IV sticks, but then she needed more and ended up with another central line at the other side of her neck.
Most physicians focus on healing – curative care. They were taught that death is failure on their part. No matter what, they did not want to let the patient die. They would take extraordinary measures to try for a cure. Dr. T was like that. Even with a 90-year-old who was suffering from multiple problems, he kept pushing for the cure.
I felt like there wasn’t enough focus on mom’s quality of life and her prognosis. If there were little likelihood of her recovery, we would make different decisions. We would opt for less invasive treatment and more “comfort care”.
My problem was that I didn’t know where to draw the line when the doctor asked for “consent” to put in a central line or to put in a catheter (which might lead to a urinary tract infection), or to do additional surgery with all the risks of anesthesia and surgery combined. How does an ordinary person make these decisions? Even though I had spent my career in medical settings, I was not a doctor or a nurse and I didn’t know the real implications of each decision. I asked for help.
I thought there was too much focus on mom’s physical problems and not enough on the emotional issues that were so important to both of us. While I knew mom didn’t want to receive “extraordinary measures” to prolong her life, I didn’t know what was “usual care” and what would be considered an “extraordinary measure”. I asked the nursing desk for a referral to hospice.
Instead I was given a consult with a Palliative Care team and I met with them several times. I was confused about the difference between Palliative Care and Hospice. At first, I thought the Palliative Care Team was the door through which I would enter to get hospice for mom. The Palliative Care Team was very helpful in delineating what decisions might be irreversible (such as putting in a feeding tube or starting permanent dialysis), but I was still under pressure from the physician and specialists to approve every procedure they suggested. The Palliative Care Team seemed to work with the rest of the care team. I had expected they would be more like a separate Hospice unit.
I don’t think I had ever heard of Palliative Care before this hospitalization. I learned that Palliative Care was a unit within the hospital. Palliative Care is a branch of medicine that focuses on “providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.” http://www.getpalliativecare.org/whatis
It took more than a week before I realized I had to request another consult – this time with Hospice directly – in order to get mom into hospice care. By this time mom had a second surgery, two central lines, a catheter and a urinary tract infection and 7 specialists who came to see her every day. It was overwhelming for both me and for mom.