A troll recently hit our hospice’s social media page. His anger and vulgarity exposed his pain, still fresh after the loss of his mother, some unknown time ago, to lung cancer. “She was just fine!” he yelled, “Her lung cancer wasn’t bothering her or me, and then hospice came in with their medications and murdered her”. I was annoyed he vented himself thus in our advertising a summer camp for local youth who have suffered a loss. Maybe his outburst was appropriate, though. He was after all, a woman’s son – someone’s child still suffering in his own grief.
Let me share one important truth: Hospice doesn’t kill people.
Cigarettes do. Tumors do. Alcohol, consumed excessively over time will. A weak and failing heart will. Sometimes, the treatment for those ailments will.
When those enemies of life have torn down the walls of healing and your defenses are diminished, hospice is who you want walking with you as the battle wanes. They are Warriors who will see you safe to the end of the dock, where you must cross over to the other shore on your own. During this time, your hospice team will keep you as physically, emotionally and spiritually comfortable as possible.
Do I wax rhapsodic about hospice? I do. This form of midwifery has fascinated me first reading Elizabeth Kubler-Ross’s seminal work “On Death and Dying”. Just as childbirth was sterilized, medicalized and managed in the last century, so was death. The rise of the medical and pharmaceutical empires removed these natural milestones away from the home and those who could honor, protect and keep sacred these passages for both individual and family. Our culture became anxious about birth, anxious about death, and given the plethora of sedatives and anti-depressants dispensed, anxious about everything in between.
Dying is a passage, not dissimilar to labor. Different “stages” have distinctive milestones and characteristics.
- Early in the process of unremitting but incremental decline is a turning inward – sleeping more, increased isolation and choosing more intentionally how one spends their time. Personal energy management focuses on conservation rather than strengthening.
- There may be a focus on life review, sharing important stories and making plans for one’s last days. This can be uncomfortable for family who are not at the same point of acceptance as the person wanting to talk about it all.
- In the last month to six weeks, it is common for appetite and thirst sensations to decline. Dying people don’t starve to death, but they do decrease their intake. A body conserving energy doesn’t need fuel, and doesn’t need to use up energy for digestion. This is a natural function of the body. We have to get our heads out of the way so the body can complete it’s life cycle.
- Dying people often talk about “those who have come to help” or “those who are waiting for them”. Sometimes they are recognizable; sometimes they are strangers or “angels”. Rarely do they incite fear.
- In one’s last days, it’s not uncommon for patients to talk of “going home”. This is often confusing to the family, who often respond with “you are home”. My own mother asked often in her final days if she could go home now. My sister carried guilt unknown to me for several years, as she thought Mom meant going back to her house. “Home” is a much bigger place, and somewhere the dying want to get back to.
People approaching their end of life can experience unnecessary suffering. The ethical and professional role of hospice is to provide comfort. Sometimes that comes from the confidence gained by knowing this is a normal, natural process – this business of dying. Sorting out tumultuous relationships can reduce emotional pain. Position changes, massage, heat, and favorite foods can increase physical comfort. And when needed, hospices have “rescue meds” or “emergency kits”.
These medications aren’t prescribed lightly, nor do our patients or families treat them so. These are powerful tools that are highly effective when other resources are not.
A usual order for morphine sulfate solution starts at 0.25 ml. Measure 0.25 ml. It’s about 7 drops of fluid. The maximum dose of 1 ml (20 mg), is 1/5 of a teaspoon. It is concentrated. The dying body is sensitive, and it doesn’t take much to effect pain relief. If pain is not relieved to the level the patient has stated a desire, more can be given. If pain is not managed (not alleviated but managed), hospice is not doing it’s job.
One side effect of morphine is that is slows respiration. This is incredibly effective for people with chronic lung disease who are suffering from air hunger, because morphine tells the respiratory center in the brain it doesn’t need air. That increases comfort by reducing the respiratory effort, which then reduces anxiety, because the patient doesn’t have a sensation of suffocation. (Who wouldn’t relief from THAT???). Morphine in this case is not given to treat pain, but relieve another symptom. Still — not given to commit murder.
Our angry man’s mother died of lung cancer. I can imagine that she fought hard to keep her discomfort from her son, and that she experienced relief when she was no longer struggling to breathe. I hope her last hours were peaceful, knowing there was support for both of them during her last days and beyond. (She does not to appear to have been my agency’s patient).
Hospice is available to patients at the time a doctor could say “With the progression of your disease, I’d be surprised to see you in six months”. It’s sad that most people don’t engage with hospice until the very last days or hours of life, as they encounter chaos and confusion during the rapid end of life changes their loved one is experiencing. A resource that can provide education, information and comfort in three domains – physical, emotional and spiritual, is too often lost.
Not all people die on hospice. Sometimes by improving symptom management, patients regain strength and overcome their “episode”. We’re ok with that. For those that don’t, and for their loved ones, Hospice will hold your hand, offer you comfort, and give you a safe place to grieve when all is said and done.
Hospice doesn’t kill people. It is a service courageous enough to address the dark issues that can plague the end of life, hold you up through the pain of disease, and later the pain of loss. In the end, it strives to give families and patients confidence, support and rest while attending to the cares of one who’s life is slipping away.