The Latin root word for palliative is palliat, or “cloaked”, and palliation does in a sense cloak or mask a person’s pain.
The five principles of Palliative Care are:
- Provide relief from pain and other distressing symptoms.
- Integrate the physical, psychological, and spiritual aspects of patient care.
- Offer a support system to help patients live as actively as possible until death.
- To affirm life and regard death as a natural process.
- Intend to not hasten or postpone death.
Woody Allen once said: “I’m not afraid of dying, I just don’t want to be there when it happens.”
Many of us might echo that very same sentiment. Everyone will die. We get it. We’ve slowly watched loved-ones and friends pass ahead of us. Yes, we’ve grieved losses big and small: of career missteps, relocation, relationship fractures, financial failures, our own health problems, dying pets, lost opportunities, or property loss (to name just a few). Those departures of loved ones and all of the many defeats (trials) that life hands us should only help prepare us for the final task of life – dying.
The dying process of anything (plant or animal) should remind us of how quickly life advances; and therefore – we should kick up our heels and live in joyfulness – with courage and conviction, a will for adventure and learning, a sense of purpose, and humble service toward others.
We chuckle and nod at the often quoted axiom: “The only things we can be certain of in life are death and taxes.” Well, we know we can be certain of much more during our brief encounter with earth: love, beauty, friendship, and a multitude of ways to find meaning and delight. On the other hand, our description of the realities of earthly existence would not be complete without acknowledgement of the challenging and painful aspects as well.
Life on earth is not for the faint-of-heart. My father would often say to me (in regard to the sustained effort needed for life and the futility of comparison): “Mairzie, fare (fair) is what you pay to get on a bus.” “Ok, dad – so life is not fair. Point well-taken (said the naïve, twenty-two-year-old college student). But dad, you argue that God does not dole out “fairness tokens.” We cannot pray harder and longer for God’s favor.” (I get it now; as someone who has been kicked around the block a few times). But, some people do get stuck picking the shortest straw (through no fault of their own) and endure horrible circumstances in their one shot at this world. As I see it, some lives are “more fair” than others.
Palliative treatment can provide a more level playing field in life; at least in the realm of medicine.
People have often asked me if working as a hospice chaplain was depressing. I think they were often surprised by my response: In general – no, it was not depressing; instead, it was hopeful, sacred, sad, poignant, a privilege; and often – a relief for all concerned. Moreover, often it was more taxing to deal with some families than the patients. As a hospice chaplain, I’ve sat bedside for hours. Day-after-day, year after year I witnessed the arduous process of dying – physical annihilation – and to be honest, it is a fairly similar undertaking for everyone. On the other hand, the emotional and spiritual aspects of dying are as unique as each patient – vigils demonstrated courage, regret, anger, visions of ancestors and holy figures, introspection, remorse, forgiveness, love, and resignation.
We can either go out – kicking and screaming; trying to control every segment of the process – or surrender in faith.
As we all know, no one remembers their own birth and the feverish work to grab that first foothold on earth; and at the very end, most people are unresponsive as the final drudgery to birth the soul into heaven progresses; seemingly without them. What is a soul? As we shed our bodies in the dying process, one’s essence or whole being of mind, heart, and spirit is exposed and illuminated. It never dies. That is why I call death – a passing.
Death is truly a metamorphosis – like the stages a butterfly goes through: within the chrysalis, the old body parts of the caterpillar are undergoing a remarkable transformation (much like a soul) as it readies for the final stage of its life. Similarly, as the body dies – the soul is preparing to emerge into the fullness of the Divine creator. We should all want to be present for this miraculous event.
If the palliative medicine professionals and hospice providers do their jobs well, patients and their families should not be afraid “to be there when it happens;” whether living through a chronic illness or in the throes of dying – as Woody Allen so succinctly described his own wishes on the subject. As well, if patients and their families enter hospice care in a timely manner, they can help design and facilitate the type of death they want – a good death. The process becomes a celebration of life and the chaplain and family take on the role of a spiritual midwife to help escort the loved one home.
Most Hospice providers create lovely and comfortable dying experiences. But not all manage to maintain comfort at the end-of-life (for a myriad of reasons), which is the reason I write, speak, and advocate for hospice consumers.
The antidote to acute physical discomfort, unabated symptoms from chronic illness, side-effects from medicinal treatment, emotional angst, or outright suffering – is Palliative Care. That care can be dispensed in a hospital, in an out-patient setting, at home, or on hospice service.
I recently had an opportunity to interview Dr. Christopher Lawton, a former physician of Palliative Medicine at Froedtert Hospital and the Medical College of Wisconsin. Dr. Lawton has an undergraduate degree from Harvard University in Boston and received his medical degree from Columbia University in NYC.
Dr. Lawton defines palliative care as a relatively new field of Medicine that tries to maximize the quality of life for people dealing with a serious illness. Further, he states that palliative care is appropriate alongside curative treatment and can be delivered at any stage of an illness. The distinction between palliative care and hospice: when palliative care enters the domain of hospice, it becomes a comfort-focused plan of care. Consequently, folks dealing with a serious chronic and progressive disease with hard-to-manage symptoms and pain – can be eligible for palliative care without a six month terminal diagnosis. For example: people dealing with Parkinson’s disease, ALS, MS, Huntington’s disease, Rheumatoid Arthritis, COPD, end-stage heart disease, Alzheimer’s disease and other forms of dementia.
Specifically, Dr. Lawton said that palliative medicine focuses on the whole person (and their families). Palliative medicine starts with respectful listening to the needs, goals, and wishes of the patient to determine a plan of care. In addition to symptom management and pain control, palliative care addresses fatigue, nausea, and emotional and spiritual distress. Dr. Lawton added that scientific research demonstrates that patients who are emotionally and spiritually stable and believe in something greater than themselves (a religious faith), have a better quality of life during a serious illness and a more comfortable death.
I asked Dr. Lawton to review the current drugs used for pain management in palliative medicine and hospice: morphine, fentanyl, hydromorphone (Dilaudid), and oxycodone. Opioids can also be used in conjunction with Gabapentin, Tylenol, and Ibuprofen for effective pain relief; other drugs used in the final hours are atropine drops to help dry secretions and treatment for anxiety. Obviously, the dispensation of any medication starts at the lowest dose needed for comfort.
Dr. Lawton assured me that modern medicine has the antidote to relieve both suffering for serious, chronic illness, and to address severe suffering at the end of life (though rare). He went on to say that the majority of people die with controlled pain and are comfortable, and I would agree after watching hundreds of people die.
However, I watched some of my own patients in great discomfort at the end of life (for a myriad of reasons; which I address in my book), and I regularly hear from consumers unhappy with the amount of discomfort and outright suffering their loved ones endured in the final hours of dying.
During my time working with dying patients, religious family members openly worried that administering too much morphine would hasten the dying process; they wanted to be assured that their loved ones would die of natural causes and not from the opioid pain medication. In my practice, I have not seen the hastening of death occur from carefully prescribed pain medication. Dr. Lawton concurred that adequate pain control does not translate to hastening of death.
Consequently, we need to do a better job of educating patients, their families, and the staff of skilled nursing facilities about palliative care and hospice; and on pain management in particular. As a chaplain, I visited 50 to 60 patients in twenty-one skilled nursing facilities (SNF) scattered throughout two counties. I found that most of the facility CNAs (who dispensed the 2nd and 3rd shift medications for our hospice patients when our staff was off), did not fully understand the concept of palliative care and hospice. Further, one staffer harbored such fear about morphine that she actually tore up a physician’s order for a patient (read about the issues between hospice care and SNFs in my book).
That naïveté and ignorance proved to be catastrophic for one of my patients.
- Palliative care fills the current gap in our medical system: It replenishes and refreshes the spirit by “cloaking” pain and pesky side-effects, symptoms, and emotional distress.
- I’ve spoken to people who were so fearful of where the progression of their chronic disease would lead – to increased pain and loss of function or dignity – that they seriously considered euthanasia and physician-assisted death.
- If you, a friend, or loved one is experiencing a diminished quality of life due to a serious, chronic, progressive illness – please have them ask their healthcare provider for a referral to a Palliative Care Physician.
- The first time that you might access palliative care is in a hospital.
- Sadly, there is a shortage of palliative care specialists and hospice trained clinicians (read more in my upcoming book).