No

by Marita Len

Created on: July 17, 2010

There seems to be no clear definition of what palliative care is. Most people associate palliative care with the care received at the end of one’s life. Others will argue that palliative care, hospice care, and end of life care may be intertwined at times, but are distinctly separate types of care given at different stages of a person’s life. For purposes of this article, we will assume palliative care for a dying person to be symptom/pain management and quality of life.  In the current medical treatments environment, the short answer to the question, “Is palliative care the best option for individuals who are dying?” is no.

We are all, technically, dying. No person on Earth is guaranteed any one hour, of any one day and neither can any person predict the timeline of another’s demise. We live daily as if tomorrow will definitively come. We take for granted sayings like, “I’ll see you tomorrow” or “Ok, I’ll pick you up one of those tomorrow”. Very few people, if any, live in the present, as if this moment now could be their last.

In order for someone to start receiving palliative care as they are dying, we would have to assume there is some reason that one would think death is at hand. Terminal illness is the most commonly thought of event that would require someone to consider palliative care. The focus initially starts out with the person’s quality of life and symptom management in mind, then, as the disease progresses, pain management usually becomes the dominating concern. The problem with this rationale, is that the dying person is forced mostly to focus on their disease/dying/sympto m set, instead of living life.

Take for example my 84 year old mother. After 4 ½ years of surviving lung cancer, she learned last winter that the cancer was back. The doctors all assume that since the malignant cells in her pleural cavity this time around are the same as the previous lung cancer cells, that it’s, in fact, “back”. Metastatic from the primary site, the reports read. Additionally, she has cancer in her vertebral column. Doctors again assume that the same cancer (adenocarcinoma in the lungs) has metastacized to the bones, although no one has actually performed a biopsy or verified this in any way. “I’d be surprised if it wasn’t the same”, said one oncologist.

Understandably, doctors have to make decisions based on the age, condition of the patient and type of cancer, as to the tests that should be performed. Additionally, they would like to keep the tests as non-invasive as possible. But this begs the question, “If much of what current health care diagnosis/treatment is based on (assumption, combined with the statistical histories of prior patients with the same symptoms), without actual research and confirmation of the data, then how accurate is the diagnosis, and therefore, the recommended treatment options?” And with all this “data” being based on assumptions, how much of what could be used for cancer research is lost?

In the case of my mother, statistically speaking, many lung cancer patients having as much lung tissue removed as she had, do not live as long as 4 ½ years past the surgery date, and if they do, are likely to experience a host of plaguing symptoms.  Directly after my mother’s surgery, I asked her surgeon the status of her lung condition, assuming that after 50+ years of smoking, he would have found them black and tarry. He said to me, “No. They are healthy and pink”. In addition, she suffered repercussions of chemotherapy that her oncologists repeatedly assured her to be “a one in a million chance”.

In December of 2009, she went in for a routine oncology exam and was proclaimed “cancer free”. By May 2010, with no pain or outward symptoms other than weight loss, she was told the cancer “was back.” Recently, she underwent radiation therapy for the cancer lodged in her back and was set to receive chemotherapy for the lung cancer. Cardiac complications (unrelated to the cancer) landed her in the hospital for a week. During this period, various doctors swung her body from hydration to diuretics within a period of hours, and switched medications several times, unknown to her. In an effort to find out what the priority in treatment was, I went to the hospital to speak with her doctors. Her oncologist came into the room and we began discussing chemotherapy. He stated that when cancer returns, the objective to chemotherapy changes from potentially curative, to palliative only, and told her that the chemo would not get rid of the cancer, only prolong her life for a few years, possibly. He based his expertise on histories of patients that were dissimilar to my mother in several ways. I watched as the hope that was there drained from her permanently and, to date, she has literally resigned herself to sitting in a chair, waiting to die.

Much as I’d like to say that this scenario is rare, it unfortunately takes place in hundreds of hospitals across the country. Doctors predict and prophesy to their patients based on their own experiences, what they read, and conversations with other doctors, not on the custom data that presents before them. The next step is to offer up standard remedies, chemo, radiation and/or medications to relieve the pain, eventually talking of hospice care. 

While there are some exceptions to what is considered standard palliative care, there are not enough places in the country that focus on the well being of the person faced with a terminal illness. There are no clear cut, one size fits all answers to treatments and individual decisions; however, one thing is constant and must be cultivated at all costs, hope.

When the physical body is failing, sometimes the only catalyst to wellness becomes the mental challenge, driven by hope. No doctor, no health care provider, no person here on Earth, should squelch that. Because there is not one person who can definitively say what will be and should not arrogantly state “facts” as if they know otherwise. There is a difference between giving someone false hope, and giving them the opportunity to focus on the time that is allotted to them.

In 2006, we watched as my brother struggled with the same journey. We said goodbye for the last time in the fall of that year. To quote him (with regard to all the decisions and managing others’ emotions), “Living is hard enough, dying is a pain in the ass.”         

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