“There is a time for everything, and a season for every activity under heaven: a time to be born and a time to die….” (Ecclesiastes 3:1-2)
Ever since the fall of man in the garden of Eden, death has been the inevitable expectation of our human existence. Historically and culturally, the continuum of the natural life cycle has always been understood to be finite. Even the most cavalier and arrogant among us admit that they cannot ultimately escape the throes of death. Yet the development of technological advances throughout the 20th century has produced the philosophy that in fact, we can “beat” death – that we can actually “save lives.” Astounding scientific breakthroughs, “miracle” cures, and new surgical techniques have certainly served to modify disease processes, delay death, increase life expectancy, and restore health. But are they unwittingly furthering our subconscious notion of immortality? Without question, many of our advances have enhanced the quality of our earthly existence. In the process however, death has somehow become the enemy, as opposed to the ultimate conclusion: the expected, natural end to life, no matter how it may have been lived. Somewhere along the line, we have adopted the perspective that somehow death is an option for us. And it is precisely that attitude that propels both the medical and lay populations into therapeutic decisions that are designed to battle death with virtually no accommodation for its acceptance. Extraordinary attempts are made to extend life by days or weeks, in many circumstances with little regard to the physical, emotional, or spiritual cost to the patient or family. At times these heroic efforts are imposed without consideration of the wishes or values of those being treated, instigated because this is what medical science has to offer. The arrogance of this system often prompts physicians and other health care providers to assume that because an invasive treatment is available, it should be applied. Dan Callahan has commented, “ . . . we will live longer lives, be better sustained by medical care, in return for which our deaths in old age are more likely to be drawn out and wild.”
Within our current hospital-centered, cure-oriented health care culture, over half of all deaths occur in hospitals. If one adds nursing homes to the list, over three quarters of deaths occur in facilities, this despite surveys that show that 90% of Americans would like to die at home when facing a predictable death. Death comes attended by strangers in a strange place, with the dying patient bearing the burden of inappropriate “life-sustaining” treatments (“death-prolonging” would probably more accurately describe many interventions), high symptom distress, and poor to non-existent communication about goals of care, options, and values.
But it hasn’t always been this way. Once upon a time, people saw death as a normal part of the life. A century ago, the focus of medical care was comfort and relief of suffering. Most people died at home, with family at the bedside providing the emotional support necessary for the transition from this life to the next. Death, while carrying the sadness and grief appropriate to the loss of a loved one, nevertheless was seen as a natural process.
It is on this backdrop of medical evolution that the hospice movement developed. With its genesis in Great Britain in the 1960’s, it was imported to the United States in the 1970’s. There are now over 4,000 hospice agencies in the US, and virtually every population area has the availability of hospice resources.
So exactly what is hospice?
Hospice is the term that is generally applied to the spectrum of medical care offered at the end of life. Agencies that use the name “hospice” and accept payment for hospice care are required to provide a basic menu of services to their clients. Hospice is unique within the medical community in that it provides its care through an integrated, interdisciplinary team. The basic team includes the home care nurse, social worker, chaplain, medical director, and volunteers. These providers all provide distinct services to patients in their homes, and meet on a regular basis to discuss, refine, and implement a plan of care most appropriate for each patient and family. The hospice philosophy of care seeks to determine the unique interests and values of each patient and family, and bring the necessary resources into their environment. With the reality of death imminent, the focus is on bringing a sense of meaning, beauty, and hope to the patient and family. Hospice workers are expert in the science of symptom management, specialists in the art of compassionate caring. The goal is relief of suffering, management of symptoms, reconciliation of relationships, and assistance in the transition between this life and the next.
We all want ultimately to accomplish true healing in our life. But “healing” cannot be seen as synonymous with “cure.” It is not simply the absence of disease, but rather the sense of peace that comes when relationships have been reconciled, emotional wounds soothed, and spiritual struggles resolved. If we continue to avoid or deny the reality of dying experiences, we prevent not only ourselves but also our loved ones from experiencing the richness and fulfillment that comes with honest, intimate sharing of life at its most vulnerable moments. It is for this express purpose that hospices came into existence, why they must thrive, and why they must garner the support of the communities they serve.
Who qualifies for hospice services?
Eligibility for hospice resources is relatively straightforward. It is required that the patient has a terminal diagnosis, and if the course of illness runs its natural course, death would be expected within 6 months. Additionally, the hospice-appropriate patient will have exhausted or abandoned curative or remissive therapy. While traditionally thought of as a service provided to cancer patients, any terminal diagnosis can qualify. Emphysema, congestive heart failure, dementia, and kidney failure are examples of non-cancer conditions that are frequently seen in the hospice setting. And while the hospice Medicare benefit has brought the focus of hospice services on older folks, patients of any age can benefit from hospice resources. Pediatric cancers, heart disease, and other chromosomal and congenital diseases are examples of conditions that are seen in the pediatric hospice environment. Anyone expecting death – over 90% of Americans will be in a position to anticipate their death – deserves the opportunity to experience their dying experience with the benefit of hospice services.
What does hospice provide?
Federal guidelines have dictated the resources that hospice agencies must provide to Medicare recipients. Most other insurance companies have followed suit, and most hospice agencies have developed a consistent menu of services that they provide to all clients. The personnel resources noted above are included as essential components of hospice services. In addition, any medical equipment (hospital bed, commode, wheelchair, etc.) and medications related to the terminal condition are provided by the hospice. Treatments which are designed to provide comfort or relief of symptoms are also covered. These might include palliative radiation therapy, certain types of chemotherapy, and transfusions. Simply put, the focus is providing to the patient everything they need – and nothing they don’t – in an attempt to optimize comfort.
What can you do to help yourself or loved ones who may be faced with a terminal illness?
• Understand what your health care providers are telling you about the illness. If their explanations don’t make sense with what you feel, ask questions. And keep asking until you understand. Predicting prognosis, or providing accurate answers to the “how much longer” questions, is very difficult. Don’t rely solely upon the answers to those questions to plan the future. Enjoy each day for the blessings that it offers.
• Don’t accept the statement “there’s nothing more we can do” or the sense that “all hope is gone.” It may be true that there is no longer a cure for the disease, but there is always much that can be done to enhance the quality of life and relieve suffering. And there is always hope that we can find meaning and purpose in whatever we may happen to be experiencing.
• Enjoy each day for the blessings that God has granted. Marvel at the sunrise, the butterfly, the colors of the rainbow, and beautiful music. Immerse yourself in the beauty of human connection, of touch.
• As sad as the prospect of death may be, do not fear the dying process. Our knowledge and level of skill allowed us to approach the dying experience with compassion and confidence.
• When faced with a terminal diagnosis, seek Hospice services. The staff can help you to understand the issues and the process, and will walk with the patient and family up to and beyond the point of death, facilitating all of the processes that will allow this “healing at the end of life” to occur.