What does a hospice experience look like? Obviously, it is as unique as the patient and the circumstances of a family and as variable as the physical plant to which it is delivered. It is more than pain relief, symptom management, and the comfort measures it is designed to provide. Although most families will say that expert pain management is their most important criteria for their loved ones for choosing a hospice.
Often, when patients or families announce their decision to enter hospice care they offer a disclaimer: “This doesn’t mean that we are giving up.” Our response might be to nod slightly and produce the Mona Lisa smile, but they are correct. Technically, a hospice placement isn’t an automatic death sentence. Currently, the palliative care that is a precious slice of hospice treatment is also an option for patients who have a serious and progressive chronic illness with uncontrolled pain, but are not yet appropriate for typical hospice services. Many providers are starting to offer this type of program and there are options for payment (info for future blogs).
However, I am addressing the hospice experience for those patients that are enrolled in a Medicare-Certified Hospice program with a life-threatening illness of six months or less. I’d like to imagine what a hospice experience could be like and what I’ve seen it to be based on my experience with my parent’s dying process and hundreds of patients. Those consumers sought hospice care in residential facilities and at home with both for-profit and nonprofit providers.
Hospice can be much more than a medical provider, especially in the emotional and religious realm. Even if a patient is not religious – all human beings are spiritual. The five aspects of the human person are: intellectual, emotional, social, spiritual, and obviously – physical.
What does the spiritual strand entail? In short, it encompasses our sense of meaning and purpose in life. For example, people find meaning through many endeavors: the arts, creative expression, in nature, through careers, family, travel, sports, volunteerism, politics, hobbies, friendships, literature, meditation, and/or participation in a major religious tradition. In other words, people have a myriad of ways to find meaning in life without being religious. So I always tell patients and families that a chaplain is a valuable asset to them on the hospice team regardless of religious affiliation or lack thereof.
So what can hospice hold for patients beyond pain control, symptom management, and comfort measures (which are priceless to the hospice consumer and a free Medicare benefit for all ages)
Response: Hospice can be a time for anything (left to do) under heaven.
Hospice can be a time that is intensely moving: a season when all of a sudden we recognize our incapacity to fully fathom or integrate within ourselves the magnificence of this period. At this time, a chaplain and social worker can come in handy; in their particularly specialized role.
I want to list some creative ways that my patients and I (in coordination with the provider) broadened the menu of life-giving possibilities in hospice for the heart and soul. However, I needed to adapt my spiritual and religious practices to fit the needs of the patient in whatever stage of physical decline they brought onto our service.
A time for spiritual alignment, humility, and guided vulnerability.
A time to tackle “unfinished business.”
A time to inventory the inner world of the self; to take stock.
A time to move to the passenger seat and let the Creator have a crack at driving.
A time to lose our lists and stop setting agendas.
A time for liberation and ditching our “best-laid plans.”
A time of deep inner-listening and quiet seeing.
A time to accept the reality of the decline of the body and instead notice the blossoming soul – clamoring for patient attention.
A time for positive and authentic self-discovery or rediscovery.
A time to say and do, what we need to say and do.
A time to enjoy fountains and flowers, old photos and new friends, pets and ponds, music and good art, gourmet food and fine wine, family and fresh air, birds at the feeder and visiting deer. Consequently, in-patient hospice residences rely heavily on the natural beauty of the external environment and the internal artwork and calming color palette of the rooms to help patients find serenity.
For example, the nonprofit in-patient provider where my father lived and died, even brought a sense of humor and whimsy to his life when a horse from a neighboring farm showed up at his private patio door. Next, the very well-behaved “Mr. Ed” proceeded to clip-clop into dad’s room. We were all dumb-founded. You see – my dad had worked on a relative’s farm during breaks from school and those warm-hearted and long-ago memories were sparked to life once again. We all had tears, as we listened to stories we had never heard.
As well, hospice can be a time when the youthful sense of abandon and innocence can resurface, as all inconsequential drugs are scrapped and the discomfort from nasty side-effects is ended. In fact, my dad felt so well that he wondered if he even needed hospice; but he died two weeks later. Indeed, he was in the right place.
Patients and families could take advantage of the rich possibilities of the hospice benefit if they entered hospice at the time of diagnosis; instead of undergoing painful and invasive medical treatment to purchase more futility. For example, when my mother was battling end-stage ovarian cancer and moderate dementia – we decided to try one year of treatment. When the cancer returned and her oncologist suggested another round of chemotherapy, we decided (for her) to stop treatment and enter hospice. She was not able to contribute to the decision-making at that point in her disease progression.
She knew she hated losing her hair and detested the exhaustion she experienced during the course of treatment. So our litmus test was this: if the treatment could not be a bridge to further health and a better quality of life, we would decline further intervention. For our mom, the medical treatment was only a bridge to a worsening dementia and a continued decline for the quality of her life.
These scenarios would be easier on family decision-making if every one of us completed an advanced directive for end-of-life medical care.
As Franciscan Priest Richard Rohr states: “in life, we would be wise to prepare for death before death”. If we haven’t attempted to do just that, hospice can be that time (better late, than never).
Rohr goes on to assert: “We must stumble and fall (in life) or we will never give up control to God. Until we are led to the limits of our present game plan and find it insufficient, we will not find the Ultimate Source (or our true selves, for that matter). AA calls it the Higher Power and Jesus called it “Living Water” (John 4:10-14).
In summary, let hospice be a time of “investigation into conscious living and conscious dying.” A life-limiting diagnosis and shortened prognosis can be our “stumbling stone” – the shocking obstacle that finally gets our undivided attention. (Author Ram Das, as quoted in the book: “Who dies?: An Investigation of Conscious Living and Conscious Dying.” Authors Stephen Levine; Ordrea Levine. Anchor, 1989. (89))
“Why is it necessary to find my Ultimate Source on earth – months before I die,” asked one of my elderly patients. “Why can’t I just wait until I get there? I’ll be there soon.” Obviously, patients set the agenda of their own spiritual or religious work with the chaplain during hospice, but my patient had a lot of accumulated anger and had demanded answers. (Sorry, you’ll have to wait and read my response in my forthcoming book).
Obstacles do not have to block the path, obstacles can define the clear choice forward (if we are paying attention). Author unknown.
An excellent hospice provider should enhance and enlarge a patient’s universe at the end of life – not make it smaller and more narrow.