Hospice, a word that came into the American vernacular subtly around the end of the 1960s, is now deeply entrenched in the care of those with only months to live. Stemming from a word used during the Middle Ages in Europe where travelers on religious pilgrimages would be taken in for care and rest, it is now an international movement with supportive organizations. Their central thesis is that the dying deserve a better quality of end-of-life care than previously provided.
Gradually, the movement morphed into a means of providing a more humane, empathic care for the dying and one aspect of this care was the formulation of a powerful mixture for pain relief; Brompton’s Mixture. Consisting of morphine (sometimes heroin), cocaine, alcohol and, occasionally, thorazine with a food flavoring or additive to increase palatability, it was a rare commodity in the United States. The stigma of heroin, a potent pain killer, lay at the base of much of the resistance which was not so in Europe. .
Personally, I became aware of hospice in the late 1970s when my mother was diagnosed with terminal cancer after years of being misdiagnosed with sciatica. If it were not for a book review I was asked to prepare, I would not have been able to assist my family to find the care our mother both needed and deserved in her final months.
The pain of losing a mother was made that much worse when we discovered that even with a prescription, we could not obtain our mother’s pain medication. No pharmacy would fill the script. Only through a co-worker, whose husband had needed this mixture, did I find one pharmacy in New York City that would dispense the medication, but only if I purchased two bottles of the extremely expensive concoction at a time. The pharmacist was terrified that, should anyone know he had cocaine in his shop, he would be robbed or worse.
The drug run began, but only once, before the hospital, where my mother’s new oncologist worked, agreed to provide the mixture. Incredibly helpful, they asked only one-quarter of the price the pharmacy had charged.
I now understood what it must be like for anyone carrying an incredibly valuable and almost-unobtainable medication in my car for the drive to my mother’s home. Each traffic light for which I had to stop initiated another pang of fear that someone would snatch the backpack containing the precious bottle of the liquid. I armed myself with a tire iron which I placed in full view on the dashboard as a not-so-subtle sign that I would defend myself. Looking back, it seems so surreal.
Since that time when my mother died without pain, I have had another relative in similar circumstances, but times have changed. Her diagnosis and refusal of treatment (which would have provided perhaps two months of life), led to her admission into a hospice program while she remained in her home. Now I’ve heard tales from others.
The nurse, who came for my relative’s medication monitoring and family instruction about administration, failed to see that tablets would be of little use; she couldn’t swallow one. Impaired cognition brought on by brain cancer made medication dispensing more problematic. A family member had to ask the reason a liquid wasn’t being used. The nurse then agreed that would be a better alternative. I did not agree that she was adequately trained. Perhaps this was just an anomaly of the preparation for hospice nursing.
Today, I heard from a friend whose father-in-law recently died from advanced cancer. My friend was angry at the medical establishment which he believed failed this man in his hour of need. I wasn’t sure because he, too, was in hospice care at home. His family was constantly attentive to him during his short illness but they believed more should have been done for him. In fact, they believed the medical establishment had cast him aside, refusing treatment. This is where the flaw may be detected.
Hospice, which appears to have become big business, doesn’t provide treatment per se other than comfort care. There is no chemotherapy, only palliative care to relieve the dying and provide support for the caregivers and family.
But, in this case, the attention to detail in explaining exactly what hospice is and isn’t appears to have been missing or inadequate at the very least. The family still believed that he should have received treatment for his cancer, not comfort care exclusively.
The goal of hospice is restricted, assuredly, and pneumonia may not be treated if it isn’t considered in the best interest of the patient. Some may see this as denying treatment but I don’t. This man spent much of his remaining days in a state of semi-consciousness, not the manner in which many of us believed hospice would provide.
I don’t know how many hospice patients attend the theatre, although some probably do. Nor do I believe many remain in their current jobs or even as active as Steve Jobs, the creator of Apple, who knew he was dying even as he addressed one of the eagerly-attended Apple conferences. But the premise of hospice is that the person will continue a somewhat normal routine in their life and engage in it however they wish, not comatose and unresponsive.
Another sterling example of someone who knows their lifespan was limited and continued in their profession is Dr. Randy Pausch, a brilliant computer scientist at Carnegie-Mellon. Want to see how he dealt with his disease? View his presentations on YouTube or read “The Last Lecture.” Both of these men are outliers on the hospice spectrum, in my opinion.
The medications relieve the pain, if properly monitored, but may not afford the active lifestyle hoped for. These men may have been in some variant of hospice, but I don’t know. All I know is that they knew they were dying and chose how they would live out their final days. For Pausch, it was driving a new red Mustang and preparing for his family’s future after his death.
Preparation, therefore, is still one of the main elements of hospice. How do we know it has been sufficient and when does the aftercare begin and end? Compassion must remain the essential element in these programs.