As a practising cancer specialist, I see many patients whose cancers are incurable, and the aim of any therapy — whether chemotherapy, radiotherapy, or purely symptomatic care — is to lessen their symptoms and thereby improve their quality of life. Once the options for active treatments have been exhausted, it is easy to understand why so many patients choose to pursue unorthodox therapies. The practitioners of these treatments usually promise patients far more than I can, and they offer hope to desperate people. My patients often justify seeking such treatment with, “I have nothing to lose.” Regrettably, I am now well informed on how much they have to lose.
My wife’s sister Robyn was 42 years old when she was diagnosed with metastatic breast cancer. Unfortunately, her disease was aggressive and responded only transiently or not at all to the various chemotherapeutic regimens her medical oncologist tried. Having reached the point where further chemotherapy was likely to offer her only toxicity with no realistic chance of benefit, she was informed by another patient of the Klinik St. Georg, in Bad Aibling, Germany, headed by a Dr Friedrich Douwes. Robyn had two children aged 9 and 7, and she was desperate to try anything that claimed to offer her the chance of seeing them grow up. In fact, she was not just offered a chance, but an 80% probability of cure. She went to Germany with her husband. My advice was neither sought nor offered. My wife and I had decided to say, if asked, that we supported whatever Robyn decided to do. Any opposition on our part would have been futile anyway, because she was absolutely committed to this course.
The Klinik St. Georg offers patients a smorgasbord of anti-cancer treatments, ranging from conventional chemotherapy (although at significantly lower dose than most cancer specialists would consider optimal) to the decidedly unconventional: Galvanic therapy, high-dose intravenous Vitamin C, hyperthermia, herbal therapy, “immune stimulants,” reflexology, and more. Accompanied by her husband, Robyn spent three weeks in Germany receiving a combination of chemotherapy and hyperthermia before returning home. The uncomfortable side effects of the chemotherapy were more severe than she had experienced with any of her previous treatments; and she lost her hair. During the three weeks after her return from the Klinik, she developed new symptoms and her x-ray films revealed a large mass (metastatic tumor) in her right lung. Even to a layperson, logic would suggest that her recent treatment had been ineffective. Robyn also suspected that this was the case, and faxed the x-ray report to the Klinik St Georg. But despite several attempts, she was not able to speak to a doctor at the Klinik about the implications of the x-ray film. She was told by one of the Klinik’s secretarial staff that if she heard nothing further she should keep her next appointment at the Klinik, due in a matter of days. It came as no surprise to me that she was not contacted. But, because she was desperate, she went back to Germany.
Robyn’s health had deteriorated significantly when she arrived back at Klinik St Georg. She was too unwell for cancer treatment of any kind and was bedbound for the first week after her arrival. Her husband was told by Dr. Douwes to “start praying for a miracle,” which probably reflected his opinion of the likelihood of any benefit resulting from his treatment. Yet Robyn was given more chemotherapy, this time consisting of a drug to which her cancer had already been proven resistant by her Australian oncologist. At no stage did Douwes suggest that she should return home to her children. He attributed her weakened condition to an infection acquired before she had returned to Germany, and he blamed her oncologist at home for not detecting and treating this properly. This undermining of her conventional oncologist had been a feature of Dr. Douwes’ strategy and had involved outright criticism and condescension (“This treatment is accepted everywhere else in the world but Australia has been slow to accept it.”) Actually, the cause of Robyn’s decline was a condition called Superior Vena Caval Obstruction, in which the tumor in the right side of her chest had grown until it compressed the large vein returning blood to her heart from her head, arms, and upper body. This resulted in massive swelling of these parts of the body, including her brain, resulting in intermittent loss of consciousness. This is not a rare situation in the practice of cancer medicine and is a medical emergency. It is usually treated urgently with radiotherapy and steroid medication. However, Robyn’s SVC obstruction went undiagnosed and untreated.
When her death seemed imminent, Robyn’s children, parents, two sisters and brother flew from Australia to be by her side. They found the upper half of her body was grossly swollen. Douwes attributed this to “kidney impairment” that had supposedly resolved, but he was unable to explain why the swelling had persisted once the kidney impairment had recovered. The family also found Robyn in pain due to metastases in her spine, but she was given little or no pain relief by the inept nursing staff who did not even see it as their job to ensure a basic level of hygiene for their patient. It was left to the family to administer sponge baths. During this time, any contact with Douwes was by appointment only. During such appointments, the family found him arrogant and detached, and overtly aggressive if questioned about Robyn’s treatment.
Robyn died on November 12, 2001. Dr. Douwes did not speak to her family just before or at any time after her death. Robyn’s father commented that the most sympathetic person he encountered in the Klinik was the undertaker called after his daughter had died.
So, what did Robyn have to lose?
- Time with her family and friends. Approximately 7 of the last 10 weeks of her life were spent in a foreign country away from those she loved.
- Money. The cost of Robyn’s treatment was exorbitant, exceeding 70,000 Australian dollars, most of it paid in advance. This money could have been better spent on her children’s upbringing, which, ironically, was her chief concern.
- Quality of life. Robyn was made to endure chemotherapy side effects when there was no significant chance that the treatment would help her; and she had to suffer from the symptoms of a well-known complication of cancer because the Klinik doctor did not make the diagnosis.
- Faith in her original oncologist. Not surprisingly, the undermining of her Australian oncologist’s care caused Robyn and her husband a degree of anguish. Had she not died in Germany, the relationship with her original doctor might have been destroyed just when she needed it most.
- The dignity of proper terminal care. Adequate pain relief and proper nursing care are every patient’s right.
- Life. Most of all, Robyn lost what she most sought: to live. It is very likely that appropriate treatment of the superior vena caval obstruction would have prolonged her life significantly. Robyn died from a complication of her cancer rather than the cancer itself. It is inconceivable that this diagnosis would have been missed by her original oncologist or any other competent physician. On the day of her death she was given drugs to lower her blood pressure on the erroneous premise that her rapid heart rate was due to heart failure, despite the fact that she was profoundly shocked. These medications almost certainly hastened her death.
Robyn made her own decision to travel to Klinik St Georg, as she had every right to do. The tragedy is that her decision was based on misinformation and impossibly optimistic claims of treatment outcome. It is most unfortunate that people claiming to possess the cure for cancer are permitted to prey on desperate individuals like Robyn, whose only wish was to be there for her children. I think she lost a lot.
Dr. McIntosh is a cancer specialist in Hobart, Australia. His main focus is on gynecological cancer and palliative care.
This page was posted on March 7, 2002.