End of Life Care

When my mother was diagnosed with liver cancer I knew there was little to be done.  The tumor was too large to be surgically removed.  Also, it was invading and had already metastasized to the spleen.  I knew there were treatments for leukemias and other solid tumors like breast, lung, prostate, and colon cancer, but I was unaware of anything for hepatocellular carcinoma.  Hearing the diagnosis, I knew it was a death sentence.  I suggested Hospice but the rest of the family would not hear of it.  My mom was given 6-9 months.  She was torn between denial and giving up.  The oncologist had nothing to offer and knew of no clinical trials in the nearby area.  Finally, he referred her to an interventional radiologist, who in collaboration with another doctor, was investigating a localized chemotherapy, injected through the hepatic vein or artery.  It was meant to shrink the tumor so that perhaps surgery can be performed.

It was unclear what the consequences would be since it was so new, but it gave my parents hope.  They decided to go for it.  Prior to the treatment, her biggest complaint was itching and early satiety.  Also, her diabetes was uncontrolled with extreme fluctuations in her sugars.  After the first treatment, she had severe pain, nausea, vomiting and she went into acute renal failure.  She was left extremely weak and had to be hospitalized.  The itching persisted as well as the early satiety and poorly controlled diabetes.   But now her appetite was gone too.  Each of these symptoms had to be treated with different pills.  In addition, she developed anemia and had to have Procrit shots.  She became bloated and had edema and required oxygen.

My father became desperate and started seeking alternative therapies.  He found some herbal supplements meant for treating liver diseases and started her on these.   She gradually improved physically.  The CT scan showed that the tumor had regressed a little.  My mother became a little more hopeful and opted to have another treatment.  This time, she was hydrated prior to the procedure.  Still she developed acute renal failure and was hospitalized.  It was the same thing over again.  The repeat CT showed no change.  They continued to follow her with CT scans but she was too weak to undergo another treatment.  She continued the herbal supplements.

In the last six months of her life, she developed complications of her liver and kidney dysfunction, namely hepatic encephalopathy and hyperkalemia.  In her final days, she had severe abdominal pain and was admitted, placed on a morphine drip and passed away.  She lived 15 months after her diagnosis of hepatocellular carcinoma.  Perhaps this was not statistically significant (it is too difficult to prognosticate cancer survival), but was the cause of her prolonged survival related to the new chemotherapy or to the herbal supplements?

 I use this example to bring up the issue of end-of-life care.  As the population ages, we will be spending more and more dollars on end-of-life care.   When do we say stop?  When should doctors tell their patients to stop?  How should doctors tell their patients to stop?  According to my parents, they were told never to come back to the hospital because she would not be treated.  I have to take that with a grain of salt because what a doctor says and what a patient perceives may not always be the same thing due to different educational, experiential, and racial/ethnic backgrounds.

This case also poses the question of whether we should have treatment that is more palliative rather than curative and which causes more detrimental side effects?  How can it be considered palliative when the definition of palliative is to improve quality of life by alleviating pain and anxiety?  All it does is prolong life without thought of the quality of life.  Perhaps some may view prolongation of life as worth the cost of life.  But that is where end of life care increases the burden on the health care system.  Not to mention the fact that more and more research dollars are being spent to find these palliative therapies.  In addition, since the population that will require these treatments is relatively small, and it is difficult to induce these diseases in animals, humans are frequently the guinea pigs.  Sometimes these treatments are being used without sufficient clinical trials to provide data on its effects.  Are we willing to do this to ourselves and to our loved ones?

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