Since the first fledgling U.S. program was founded in the early 1970s, hospice care has grown and evolved to become one of the most well-known aspects of our health care system. Through specialized support and compassionate care, millions of patients have benefited as they approached the end of their lives. Despite decades of widening availability and a long history of caregiving, hospice remains one of the most misunderstood and underutilized resources in healthcare.
What Hospice Is Not
Somewhere along the way, hospice’s association with end-of-life issues and up-close presence in the actual dying process have become unnecessarily attached to the idea of giving up, of being a last resort. While that perception may be understandable, it falls short of the full spectrum of what happens in real-life care. Hospice is best seen as a redirection of focus. In the face of the stark reality of only so much time left, each patient’s quality of life becomes the benchmark. Every decision is directed toward making a patient’s remaining time as meaningful and comfortable as possible.
Hospice care, by definition, is intended for those who have a reasonable life expectancy of six months or less. Examples of this could include end-stage chronic illnesses such as heart or kidney disease as well as more short-term diagnoses such as advanced cancer.
Unfortunately, patients and their caregivers often wait longer than necessary to seek out hospice care—holding out until their final hours, missing out on meaningful help that could have been accessed through the entire process. The misconception that all medications will be stopped, that associated urinary or respiratory infections will be left untreated and a flood of mind-altering drugs started is not only wrong, it delays patients and their families from connecting with care that in many cases turns out to be one of the most important factors at the end of their lives.
What Hospice Is
When faced with terminal illness, a disease or condition that is not curable and has a good chance of ending one’s life in the near future, a multitude of questions arise. What happens in the dying process? Will I be in pain? Will I be scared? What happens when I die? What about my family? What options do I have? How do I continue to relate to and be helpful to my loved one who is dying?
Hospice care is tailored to addressing these questions directly. Nurses and physicians assist in dealing with pain, changes and decline in physical capabilities, as well as associated infections and wounds. Designated social workers help handle any number of issues from living arrangements to financial concerns and legal assistance with end-of-life planning. Chaplains are critical in helping patients and their families grapple with life-and-death questions and maintenance of dignity and meaning in the final stages of life. Taken together these caregivers can help navigate the uncertainty and emotional gravity of what it means to die.
Why Hospice Matters
Our society tends to shy away from anything relating to mortality and death. Hospice helps name the elephant in the room, bringing patients and their families to a place where they can talk openly and clearly about fear and loss. It also helps set things in motion such as connecting with hospice physicians and nurses, accessing resources such as medications and equipment, and receiving social and spiritual support.
As a hospice physician, I have spent more than 25 years at the bedsides of patients who are dying. Each person’s experience, every family’s interactions are unique and different. Yet across this range of stories, one theme continues to come up in my practice: Patients and their families wish they had found hospice sooner. They recognize that when they moved past the initial grief and shock of realizing that the end is near, hospice was able to step in to inform them, to assist them, to support them and to be with them right in the middle of those last days and memories.
I can say with confidence that despite our best efforts as hospice providers, we cannot promise how much time a person has remaining. But what we can do is significantly improve the quality of that time for our patients, as well as the time and interactions shared with those patients’ families and friends.
If you or your loved one is dealing with what you feel may be an end-of-life diagnosis or are coming to the end of a long-term disease, I encourage you to take the first step toward understanding your options, and contact a hospice provider to get more information. One great place to start is the Oklahoma Hospice & Palliative Care Association at ohpca.org. Whatever your situation, I hope you will reach out, ask your questions and discover how hospice can help you and those you love make the most of the time you have together.
This article appears in Fall Flavors.