As part of a research team, I interview patients who are at risk of dying and their family members about the end of life and the care that they are receiving. I talk to them about advance care planning and decision-making, as well as their goals for care. Often, these conversations reveal a lack of knowledge about treatment options and in one recent disturbing case, demonstrated that we all need to do more to ensure that patients have a say in their treatment, and receive the end of life care that they want and deserve.
Prior to approaching potential patients for consent to interview, I always consult either the charge nurse or the patient's nurse caring for them that day. In this case, I asked the charge nurse about an 86-year-old woman who had been recently admitted for non-Hodgkins Lymphoma. I wanted to know whether she would be a good interview candidate and whether there were any physical or psychological issues I should be aware of before I approached her.
The charge nurse's eyes filled with tears as she told me that today wouldn't be a good day, as the patient was scheduled for a bone marrow biopsy. She and the patient's nurse were very upset about subjecting an elderly woman to a painful procedure that wasn't going to give any more information about stage of the disease, as a CT scan had shown that her disease had spread throughout her peritoneum and chest. The charge nurse went on to explain that the woman was also scheduled to start chemotherapy in a couple of days. I asked how often such aggressive treatments were performed on elderly, sick patients and her reply was unfortunately, this has become the norm in the last five years.
A couple of days later, I had the privilege of meeting and interviewing the patient. A tall, elegant and articulate woman of German descent, she explained that she had just buried her husband the last summer after a long illness, and that the demands of being his primary caregiver had taken a toll on her own health.
She said that she and her husband had a long, wonderful active life that she was thankful for and recognized that she was 86 and did not want to suffer like her husband did in the end. She did not want heroics, but had many questions about the cancer. Will this kill me? What are the side effects of the treatment?What would happen if I didn't have the treatment? Her daughter had many of the same questions.
I told her that these were valid questions to ask her doctor to help her make decisions about her care, however she responded that there was no decision for her to make. My doctor told me what I had and what she could do for me to treat it, she said.
At her request, I asked the charge nurse to ask the patient's doctor to meet with her to discuss her treatment and answer her questions relating to palliative versus treatment options. The doctor, annoyed at the questions, went to the patient and explained that Hodgkins Lymphoma was one of the better cancers to have because the treatment was quite effective. There was no suggestion that the patient speak to a palliative care physician for their opinion, and she went on to have her first week of chemotherapy.
I saw the patient and her daughter next when she was being discharged. This once strong and dignified woman was extremely weak and pale, bent over and vomiting bile as the nursing aid pushed her down the hall in a wheelchair. I caught the look of panic in the daughter's eyes as she was about to drive her mom back home, which was over an hour away.
A few days later, I was told by the nursing staff that this patient had been readmitted to hospital and died 12 hours later from complications related to treatment.
In this case and many others, it appears that there was a prevailing attitude among physicians to treat aggressively, even though there is evidence that patients with life-limiting illnesses live longer with palliative comfort management and have better quality of life than patients who receive aggressive care.
This woman could have received comfort care instead, she suffered the effects of highly toxic chemotherapy and died days later, despite having valid questions about her treatment and her prognosis. Did she receive the information she needed to make decisions about her care? Did she ever even have a choice? I think not.