Mom died five years ago today. After living almost 70 years as a vehement non-smoker she lost her battle with lung cancer at 11:50pm in her home in the loving company of my dear sister Linda and me. The world was a better place with Mom in it and for those of us who loved her most
nothing has been the same without her.
While some may doubt the effects of second-hand smoke, to me the three decades Mom spent in a stock brokerage office--one often choked with cigar and cigarette smoke spewed forth by the seemingly endless stream of old men who'd come in to stare at the ticker--made it seem more than coincidental in her having contracted the disease that would ultimately take her from us far, far too soon.
What follows is a short paper that I wrote in December 2009 for a Developmental Psychology class I was taking at the time. I stumbled across it recently while going through some old files on my computer and felt this would be an appropriate time to share it with the world at large.
For Linda and me hospice care wasn't quite the panacea of comfort and support for which we'd been hoping. We had reached out for hospice care in hopes and expectation that it would mean near round-the-clock presence of trained care-givers, leaving little for us to contend with aside from attempting to ease Mom's fears and the heart-breaking, soul-crushing agony of watching our beloved mother slip away before our eyes.
While we were surprised and a bit disconcerted to learn that much of Mom's care would still fall to us--her terrified children, completely untrained in even the most rudimentary aspects of care-giving--the assistance we
did receive was invaluable as we struggled to preserve as much of Mom's dignity and quality of life as possible and ease her fear and suffering during the final few months of her life.
Looking back on it I now see that what had initially been a frightening disappointment turned out to be a blessing. The fact that Linda and I found ourselves providing more of Mom's care than expected only served to strengthen our devotion to easing Mom's journey from life to after-life.
It somehow feels only fitting that we--her loving children--were the ones attending to Mom's most basic needs rather than anyone else. But we could never have done so without the support of Mom's hospice care providers and home healthcare aids (true angels of mercy.)
We were able to attend to Mom's needs just as she had done for us so many years ago. The circle of life, reciprocity, karma...call it what you will but all I can say is that it just felt "right" (or at least as "right" as anything could under such circumstances).
I decided to share the following paper in a modest attempt to increase awareness of the value of hospice care and the immense good it can do at what is no doubt one of the most tragic, heartbreaking and stressful times in one's life, be it as a patient or a loving care-giver.
The moral of the story: Time spent delaying hospice care can often lead to needless and unnecessary suffering and anxiety for everyone involved.
Hospice Care: Dying on One’s Own Terms
Abstract
“How we deal with death is at least as important as how we deal with life.” --Capt. James T. Kirk,
Star Trek II: The Wrath of Khan
Modern health care focuses on the maintenance, continuance and preservation of human life. However, there are times when doing so is synonymous with the continuation of pain, suffering and anxiety. Thanks to modern hospice care, those afflicted with terminal medical conditions can choose for themselves how they will face their deaths with the same degree of dignity and control over which they lived their lives.
Hospice Care: Dying on One’s Own Terms
Even before reaching adulthood, people seek to control almost every aspect of their lives. Without the benefit of language, infants make their desires known by crying, through facial expressions and with body language, thus securing that which they desire (i.e. food, companionship, comfort or a clean diaper).
As we mature we seek to control an increasing number of factors that impact and influence our lives, from the basic necessities of food and shelter to the more mundane, such as which TV channel to watch or where to go for a vacation.
Perhaps the most fundamental aspect of control over our lives is the control we exercise over its very continuance. This is a decision most take for granted until/unless faced with a terminal illness. Once the terminal patient—let’s call him Bob—gets past all of Kübler-Ross’s degrees of grief (everything from
“Cancer? No way, it’s just a chest cold.” to
“Cancer. FUCK!!! Fetch me the Valium and Southern Comfort!”), Bob will have some important decisions to make, none more important than how he’d prefer to spend his final days.
What Is—and What Is Not—Hospice Care
In the minds of many hospice is a
place, a place where one goes to die. As stated on the
Hospice Foundation of America’s (HFA) website, hospice is not a place but a
concept of care and can be administered in both home and institutional settings such as hospitals and inpatient hospice facilities.
Many might also be surprised to learn that the majority of hospice patients are actually treated in the home (McCuen and Boucher, 1985). The HFA defines hospice as follows:
- Hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments.
- Hospice care neither prolongs life nor hastens death.
- The goal of hospice care is to improve the quality of a patient’s last days by offering comfort and dignity.
- Hospice addresses all symptoms of a disease, with a special emphasis on controlling a patient’s pain and discomfort.
- Hospice deals with the emotional, social and spiritual impact of the disease on the patient and the patient’s family and friends.
Hospice care is covered by Medicare and is appropriate for terminally ill patients with an anticipated life expectancy of no more than six months (assuming that the disease follows its natural course. (Russell and LeGrand, 2006).
History of Hospice Care
Modern hospice care got its start in the United Kingdom when, in 1967, Dame Cicely Saunders founded St. Christopher’s Hospice. The first hospice in the United States was founded in 1974 in Branford, Connecticut (Russell and LeGrand, 2006).
Today, there are more than 4,700 hospice programs in the United States serving more than 1.4 million people annually (HFA, n.d.). While this may sound like a large number of recipients, it represents only about a quarter of the people who die in the United States each year (Russell and LeGrand, 2006). Why more people fail to avail themselves of hospice care will be addressed later in this paper.
Hospice care initially focused on cancer patients. However, over the years it has come to encompass care for those afflicted with a variety of terminal illnesses, including but not limited to advanced heart disease, AIDS, dementia, ALS and advanced organ failure (Russel and LeGrand, 2006).
How Hospice Care Differs from Curative Care
Unlike traditional curative care, the goal of which is to cure disease and restore the patient back to a relative state of good health and functionality, hospice care comes into play only after it has been determined that a condition is terminal and that the end of life is imminent. Rather than focusing on curing a condition, hospice care instead focuses on the comfort and dignity of the patient and his or her loved ones.
Of specific concern is pain relief, about which most hospice care workers are experts (Wanzer and Glenmullen, 2007). Much of the anxiety brought on by impending death has to do with suffering and the fear of pain. By making pain relief a paramount and achievable goal, hospice care can alleviate one of the primary causes of death anxiety, thereby improving the quality of life for not only the patient but his or her loved ones as well.
Hospice care providers realize that the sterile surroundings, strictly-controlled routines, commotion and immodest hospital gowns inherent in hospital settings are by their very nature non-conducive to the peace and tranquility so important in satisfactory hospice care (Barnard, 1980). This is one reason that hospice care is usually most effective when provided in the home or in a home-like setting. Not only is the atmosphere usually more comfortable and relaxed, the lack of multiple patients and limited staff result in more personalized attention than could ever be possible in a traditional hospital setting (Woodman, 1998).
It should not come as a surprise that hospice care’s focus on pain management and comfort care would result in a radically different approach to the use of pain medication. Wanzer and Glenmullen (2007) make some excellent points in this regard. They point out that in a hospice care situation concerns about addiction to pain medication are non-existent. Furthermore, by giving the patient direct control of the amount of pain medication received anxiety and fear are markedly reduced.
Unfortunately, pain medications are frequently abused in non-hospice settings and are frequently the object of robbery and illegal distribution. Because of this many pharmacists are often reluctant to supply the very drugs necessary for effective, legitimate comfort-care. This can sometimes make it difficult for hospice care providers to adequately manage pain and treat their patients to fullest effect (Wanzer and Glenmullen, 2007).
Compared to many modern hospitals, hospice care can seem surprisingly low tech (Woodman, 1998). For example, a visitor to St. Christopher’s Hospice in London noted the noticeable lack of respirators, cardiovascular shock equipment, oxygen tents and intravenous feeding equipment, items routinely found in even the most modest hospital facilities (McCuen and Boucher, 1985). This is in keeping with one of hospice care’s main tenants: to neither hasten death nor prolong life.
Another key difference among hospital, nursing home and hospice treatment is that of expectation. Most patients entering hospitals usually do so with the expectation of being treated and—in most cases—cured. This is not the case with hospice care. In addition, most patients entering nursing homes or other similar long-term care facilities usually expect (or hope!) to be there for an extended period of time. Again, not so for the hospice care patient who by definition is not typically a candidate for hospice care until his or her remaining life expectancy is six months or less (McCuen and Boucher, 1985).
The focus on the patient’s loved ones is rather unique to hospice care. In fact, most hospice care facilitators consider treatment of the loved ones and caregivers to be of equal importance to treatment of the patient. Both the patients and loved ones are considered to be the unit of care (McCuen & Boucher, 1985.)
For example, symptoms of illness are often a source of embarrassment and stress to the patient, especially if he or she is receiving primary care from a loved-one. Although anxiety can be minimized by attending to such symptoms (nausea, vomiting, difficulty breathing, diarrhea, constipation, etc.) it’s not uncommon for the patient to lash out at caregivers, be they loved ones or trained professionals. By addressing the loved one's feelings of guilt, weariness and impatience, hospice care providers can help ease the family’s final bereavement. (Barnard, 1980).
Hospice care often includes respite care for family members. Like many aspects of hospice care, respite care is often provided by volunteers. By caring for the patient, respite care providers make it possible for family members to “take a break,” to rest, avoid fatigue or attend to their own affairs (Russell & LeGrand, 2006).
Perhaps nothing explains better the differences between curative and hospice care than the following remarks made by one Dr. Twycross in 1979 at the Anglo-American Conference on Care of the Dying:
"In terminal cases, the primary aim is no longer to preserve life, but to make the life that remains as comfortable and as meaningful as possible. Thus, what may be appropriate treatment in an acutely ill patient may be inappropriate in the dying.
"Cardiac resuscitation, artificial respiration, intravenous infusions, nasogastric tubes, antibiotics—all are primarily supportive measures for use in acute illnesses to assist a patient through the initial period toward recovery of health. To use such measures in the terminally ill, with no expectancy of a return to health, is generally inappropriate and is—therefore—bad medicine by definition.
"It is, however, not a question of 'to treat or not to treat?' but of what is appropriate treatment from a biological point of view in the light of the patient’s personal and social circumstances." (Barnard, 1980).
Barriers to and Misunderstandings about Hospice Care
Due to the delicate nature of terminal illness and the discomfort many experience in discussing it—especially with patients—it is neither uncommon nor unexpected to find numerous barriers to, and misunderstandings about, hospice care. Perhaps no barrier is greater than the misconception that hospice care is only for those patients who’ve given up hope (Woodman, 1998).
Russell and LeGrand (2006) contend that as the benefits of life-preserving therapy diminish, physicians can try to help their patients refocus their hope on different goals, such as spending quality time with loved ones and finding closure to strained relationships or unfinished business. They suggest physicians tell their terminally ill patients that,
“Sometimes we have to change what we wish for: perhaps hope that pain and suffering can be reduced, hope to spend good quality time with family, or hope to attend an upcoming family event.”
Unfortunately, physicians often do not discuss hospice care with their patients until it is too late for the patient to derive many of the benefits it provides. As mentioned previously, only about a quarter of those who die in the United States are recipients of hospice care. This is especially tragic given the fact that those who report being most satisfied with hospice care are those who received it for the longest period of time (Russell & LeGrand, 2006).
The stigma of “surrendering” to hospice care runs deeply, not only for the general public but for healthcare professionals as well. For patients, a common barrier is to think that they are simply not yet sick enough for hospice care. Their reluctance to explore the options afforded by hospice care can lead to a missed opportunity for considerable comfort and enhanced quality of life.
For physicians—who have spent upwards of twenty years honing their skills for healing and sustaining life—it can be difficult indeed to shift their focus from curative to end-of-life care. There is no doubt that the best time to discuss and make decisions about hospice care is before it is actually needed. (Russell & LeGrand, 2006).
Conclusion
In my opinion there is no better way to end a discussion about hospice care than with the words of Dame Cicely Saunders, the founder of St. Christopher’s Hospice in London.
“What separates man from beast are not his gadgets & gimmicks, but a disciplined way of viewing life and the ability to know what is worthwhile in human terms and what is mere biological existence. When my time comes, I ask only that I will know the difference and still have the option of terminating before one shades into the other.” (Barnard, 1980).
Couldn't have said it better myself.
References
Barnard, C. (1980). Good Life/Good Death: A Doctor’s Case for Euthanasia and Suicide. Englewood Cliffs, NJ: Prentice-Hall, Inc.
Hospice Foundation of America. (n.d.). What is Hospice? Retrieved November 27, 2009, from Hospice Foundation of America website: http://www.hospicefoundation.org/pages/page.as;?page_id=47055
McCuen, G., & Boucher, T. (1985). Terminating Life: Conflicting Values in Health Care. Hudson, WI; Gary E. McCuen Publications, Inc.
Russell, K.M., & LeGrand, S.B. (2006, June). “I’m not that sick!” Overcoming Barriers to Hospice Discussions. Cleveland Clinic Journal of Medicine, 73(6), 517-524.
Star Trek: The Wrath of Khan. [1982] The Internet Movie Database. Retrieved December 1, 2009 from http://www.imdb.com/title/tt0084726/quotes
Wanzer, S. & Glenmullen, J. (2007). To Die Well: Your Right to Comfort, Calm, and Choice in the Last Days of Life. Cambridge, MA: Da Capo Press.
Woodman, S. (1998). Last Rights: The Struggle Over the Right to Die. Cambridge, MA: Perseus Publishing.
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| Mom and me, 2007 |
