We live in a very particular death-denying society. We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize people. We can give families more help with home care and visiting nurses, giving the families and the patients the spiritual, emotional, and financial help in order to facilitate the final care at home.
– Elisabeth Kubler-Ross, On Death and Dying, 1969
Quantity or Quality of Life
We have an aversion around our own mortality and dying and death, but one adage is so apropos today – Nothing is certain in life but death and taxes! Talking about dying causes anxiety in us. However, we should be asking those facing their own mortality what they want.
A trip to Belize with the grandson, or a week along the Oregon coast with caviar, good wine and the entire family?
How we live our lives can be magnified or diminished depending on how we live out the last days, months or even years of our life. Luckily, we have a pretty holistic, albeit young, system in the US that recognizes the need for death with dignity, using the resources of our families, our homes, and our society to allow for palliative care and non-invasive ways to “dignify” our lives, or own mortality.
The first hospice in the USA was established in Connecticut in 1974, with the help of British hospice pathfinder Dame Cicely Saunders who started the first one in the UK in 1948 – St. Christopher’s Hospice.
The word hospice goes back a thousand years, and linguistically derives from the word “hospitality.” Imagine, a shelter for weary or ill travelers on a long journey. That journey is life, and for some of us, it’s more than just treacherous and precarious.
Luckily for Spokane, there are organizations and facilities in place to help families cope with a loved one’s dying, but most importantly to assist those dying to get the most of their final days. I’ve personally spent time with a 66-year-old friend in Spokane, WA, who utilized the services of hospice care to help his family work through his final days in his Chattaroy, WA, home. My friend was there with his adult children; wife; friends; and just outside the bay window, his two marvelous horses that he used to ride daily; and three peppy dogs by his side. The scents of Italian cooking wafted in the air, as did the chatterings of nieces and nephews and grandchildren.
“There is still a lot of hope and healing at the end of life,” says Gina Drummond, CEO of Hospice of Spokane. “We often see situations where people are able to heal old wounds, reconcile with loved ones, say things they haven’t been able to say before, and to achieve peace. Hospice care is really about helping patients and families achieve comfort and peace.”
As head of the Spokane-based hospice, Drummond oversees 160 employees and 350 volunteers for one of the country’s first hospices, having started in 1977. As an RN with a master’s in nursing, Drummond helps guide the spiritual, psychological, emotional and medical needs of families and individuals in Spokane, Ferry, Stevens and Pend O’reille counties during this crucial stage in life.
Fountain of Youth Is All in Our Brains
There are many ironies, contradictions and misnomers around aging in the USA. Right now,
10,000 Baby Boomers turn 65 a day. With that, there are more and more cultural commentators promulgating this idea that “sixty-five is the new forty-five” (or, “forty is the new twenty”).
Then, according to recent data from the Social Security Administration a man reaching age 65 today can expect to live, on average, until age 84.3. A woman turning age 65 today can expect to live, on average, until age 86.6.
Yet, many of us as we age do not go quietly into the night, making sure to surf, bungee jump, spelunk, scuba dive, and global trek ourselves back to some imagined youth. If we were to study mass media and culture in this society, one might think we are devolving – going back to an infantile stage vis-a-vis the methods we employ to entertain ourselves, how we eat out, and the forms of dress and activities we choose. We are country that prays at the alter of “perception is better than reality.”
This perceived youth and vitality will be surprising to many since nearly 60 percent of folks 65 and older are managing at least one chronic health condition. And, among that group, four in ten live with at least two other health conditions – 80 percent of those conditions are related to heart health.
So on one hand, we put aside the realities of death and dying. Life and quality of living are still very precious things, and the CEO of Hospice of Spokane ramifies this point: “I think we also have learned, from our patients and from their families, to not take life or relationships for granted; to appreciate all that we have and each day that we have.”
My first experience with hospice care as a volunteer was when I was sixteen, living in Tucson, after I was ordered to do community service hours for a few traffic violations I was issued on my dirt bike.
I was working with a hospice unit at the Tucson Medical Center. Twice a week for three months I read Shakespeare to one patient and took Monique, my poodle, into the room of another patient. The two dying patients I worked with taught me so many things about how we take for granted not only the simple things in life, but how society as a whole disenfranchises and marginalizes others such as the old or disabled.
I also experienced the death of several classmates in both automobile and swimming accidents. Witnessing the families of those loved ones grappling with end of life decisions was both heartbreaking and earth shattering to me.
Aging Therapy – Know Where You Came from and How You Are Going
I recently spoke with a music therapist attached to a national hospice, Seasons, which is the number one employer of music therapists for end of life circumstances in the USA, according to their website.
“We (Seasons) serve patients with prognoses of six months or less and their families,” says Anne Vitort who lives in Camas, WA, and works for the hospice as a certified music therapist. “We use music for symptom management (pain, agitation, anxiety, depression) as well as psychosocial needs (isolation, anticipatory grief, memorial services, legacy projects, communication with loved ones).”
Anne, like many of the music therapists I’ve spoken with over the years (see Spokane CdA Living, “Music to the Ears,” Dec/Jan 2015), considers music to be an embedded universal language locked inside all people, a dialect that allows people living with dementia or in the last stages of living to retrieve lost memories. “I’ll use Jane as an example – not her real name. Jane experiences high levels of pain, agitation and discomfort, so I was called in to help with those symptoms. Using Jane’s preferred music, I sang and played her favorite music matching my playing to her mood and activity level and gradually reduced the tempo and volume until she relaxed and fell asleep, reducing her need for pain and anxiety medication as well as sleeping aids.”
The fact is hospices add to life, not diminish it. The Journal of Pain and Symptom Management reported five years ago that hospice patients live on average 29 days longer than similar patients that did not have hospice care. Other studies reveal that hospice care does save bucks in the Medicare system.
Distinguishing Hospice Care from Physician Assisted Suicide
There have been battle lines in this issue of dying with dignity – in 1996, the Ninth U.S. Circuit Court of Appeals in San Francisco overruled a Washington State Law against physician-assisted suicide. In 2002, a federal court upheld Oregon’s physician-assisted suicide law after years of contentiousness.
So while death and dying and Physician Assisted Suicide (PAS) and end of life palliative care all get bundled into the same general political and medical package, there is a clear line taken by hospice organizations against PAS which is allowed in both Washington and Oregon (Vermont being the third state). The legislative, research and professional arm of hospice care in the USA, NHPCO (National Hospice and Palliative Care Organization), is working to give patients and families more say in how we die and when expensive, invasive and many times unnecessary medical intervention is too much. Here is a policy statement around PAS:
Through the review process concerning a policy statement on PAS, NHPCO’s commitment to improving access to high quality end-of-life care is reaffirmed and this will remain the thrust of its public policy efforts. These considerations lead to the resolution that the National Hospice and Palliative Care Organization does not support the legalization of physician assisted suicide. NHPCO looks forward to participating in and guiding the ongoing dialogue and debate to continuously improve upon and promote comfort and dignity in life closure, and affords the highest regard for patient choice and self-determination.
It Takes a Community to Care for the Dying
I have a retired friend, age 61, living the good life in Portland, and after a recent divorce, he has been seeking engagement and community-directed volunteer work. He in fact was attracted to volunteering for a hospice, and in Dan’s case, that’s Seasons. The training he receives will guide him on how to interact with family and patients, and how to be the go-to person for that individual who might need conversational buddies, general companionship and a friendly soul for whom to play cards.
Hospice of Spokane believes volunteers are the bedrock of what they do: “What we look for most in our volunteers is a desire to make a difference for our patients and families,” Gina Drummond says. “Our volunteers are respectful, compassionate and deeply kind. It’s also important to be a good listener and to be comfortable with silence. We have over 350 volunteers who do a variety of things – providing companionship to patients through talking or reading, as well as respite care so caregivers can rest or run errands. We have volunteers who provide light housekeeping as well as yard maintenance.”
Add to that the Paws for Comfort program where volunteers bring their approved pets to visit hospice patients. Again, like music functioning as both entertainment and therapy, pet visits can reduce patients’ blood pressure and anxiety, as well as relieve boredom, loneliness and pain.
Pets are also part of the dying patient’s life in many cases, and there are more than 30 states that have provisions for pet trusts to ensure their four-legged friends are taken care of with explicit guidance from the hospice patient once he or she dies.
One of the most recurring comments I’ve gotten from hospice workers and end of life experts is that once a terminal diagnosis happens, involving hospice soon after, rather than much later, is much more advantageous to patient and family.
I asked Hospice of Spokane’s CEO to give our readers a real life story that she remembers and uses as an inspiration or teachable moment?
“I admitted a gentleman who was a bit reluctant to consider hospice care but agreed that he needed the help. He was a very independent man and wasn’t sure how he’d feel, about having care providers visiting him. We made some adjustments to his medications (in collaboration with his attending physician) and had some equipment delivered to increase his safety in the home. He called me a week after his admission to tell me how appreciative he was of his hospice team and said also that he hadn’t felt this good in a long time! He said he wished he’d called us sooner. We hear this a lot (that people wish they’d had our involvement sooner). My hope for everyone is that they not put hospice care off to the last few days.”
Philosophical and Ethical Underpinnings
We have to remember that “hospice care” is a philosophy centered around death and dying, not the actual physical place where dying occurs. We can receive hospice care wherever we feel most comfortable, whether that is in our home or in a licensed facility. As the work of Hospice of Spokane bears out, it is a philosophy in practice, that is, palliative care allows the patient the right to die wherever they desire. For Drummond and her staff and volunteers, hospice means meeting the needs of patients – managing physical pain, s emotional and psychological pain; spiritual counseling; bereavement assistance for at least a year following a patient’s death, with that counseling beginning before the patient has passed on.
I went to a national source for death and dying issues, Atul Gawande, MD, and ended up watching Gawande’s PBS Frontline movie based on the surgeon’s book, Being Mortal. It’s clear that we fear aging and dying, and doctors fear talking to patients going through the last phase of their lives, Gawande writes. This 2015 film tackles all those hard issues around palliative care, elderly care and even Gawande’s own father facing brain cancer, chemotherapy, and dying with dignity. His father asks, “What if I don’t take any of these drugs or treatments?”
The decision of his father was to not proceed with highly toxic, painful and not-proven chemo therapy. Here are Gawande’s five questions he believes we all need to ask at life’s end:
1. What is your understanding of where you are and of your illness?
2. What are your fears or worries for the future?
3. What are your goals and priorities?
4. What outcomes are unacceptable to you? What are you willing to sacrifice and not?
And later,
5. What would a good day look like?
Gawande states: “Asking these allows everybody to understand what the goal really is — what are you really fighting for? It’s for a life that contains certain things. When I asked my dad these questions, he was very clear that he wanted a social life and he didn’t want aggressive treatment that would prevent him from being social. So if his tumor was going to make him a quadriplegic, he didn’t want to be on a ventilator or have a feeding tube.”
The subtitle of Gawande’s book, Being Mortal: Medicine and What Matters in the End is provocative in this time of more and more people questioning the value of extreme treatments for terminal diseases and conditions.
One of the myths people have about hospices is that it requires one to stop taking medications. Of course, this isn’t always the case. That fear is based on the idea that stopping meds can mean accelerated death. Even though hospice focuses on a relief-based, rather than a curative approach, that decision to stop medication is left up to the patient in most cases.
More people are utilizing hospice care. A recent report by the Centers for Disease Control and Prevention found more people are dying at home. Medicare is considering site of death as a “quality measure for end-of-life care, on the theory that dying at home may be less stressful than dying in an institution.”
- 33.5 percent of Medicare beneficiaries died at home in 2009, 10 percent more than in 2000.
- about 24.6 percent died in the hospital in 2009, down one-quarter from 2000,
- the percentage of people dying in nursing homes was little changed, though about 42 percent died in hospice care in 2009, nearly twice the percentage in 2000
The concept of grief and dying set forth by Kubler-Ross 46 years ago has also been challenged – 1. Denial & Isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance. These do not occur in stages or in this order; studies show that many of us are more resilient than psychology gives us credit for.
It’s not clear what makes people resilient. “Personality probably predicts only about 10% of resilience,” says George Bonanno, a professor at Columbia University’s Teachers College who specializes in the psychology of loss and trauma. “Having money helps, having social support helps, having minimal sources of other stress helps, but no one thing is a big predictor.”
A person like like Ruth Davis Konigsberg in her book, The Truth about Grief, believes it’s “time to move beyond our current habit of using untested theories to create unnecessarily lengthy — and agonizing — models for coping with grief that have created more anxiety about the experience instead of alleviating it.”
No matter where one falls on the grief and dying scale, losing someone is hard enough as it is, and facing your own death is daunting. Hence, the need for holistic caring.
Gina Drummond is clear about her role in our Inland Northwest: “Hospice services began by being provided in the home and that remains the most common place where people receive hospice care. At Hospice of Spokane we provide hospice care in whatever setting the patient calls home – that can mean their own home, the home of a loved one, a senior living facility, etc. We can provide equipment and support, including wheelchairs, hospital beds, oxygen, etc. to help patients stay at home. We also offer two Hospice Houses to serve patients who are no longer able to safely manage at home, who may not want to die at home for whatever reason, or who may not have a home.”
It’s clear an article on death and dying and hospice care might inspire us all to do some inward reflection, but the bottom line is a universal truism: As long as there is life, there is hope. As long as there is hope, there is life.
*****
Author’s note: I have been asked: “How can you write so, hmm, balanced and journalistic stuff in the tradition of feature writing like this, and then come off with all these other rants and polemical attacks at Dissident Voice?”
Really, I ask? Is it not possible to wear a few hats in American literature, in the world of literary arts and journalism? And, what is a blog, this newsletter, as in the struggle for peace and social justice, to the world? Is it not a gateway into the humanity, laid bare, sometimes prosaic, other times erudite but spot on? Can we not have room for contradictions and hypocrisies in our own brains? Can’t the might of the pen be utilized or deployed like an arc of plasma into the hearts of humans? Will some always decry the rumbling and syncopated insanity of some of the work I write, and still accept the more mainstream credible?
The funny thing is that at the magazine I also work at, there is a caveat to ALL of my work, even though some of it has won journalism awards against big markets like Seattle and Portland. The caveat is — All of the opinions and expressions made by Paul K. Haeder are not necessarily those of the publisher or the staff.
Imagine how quickly we shift our baselines, our perspectives, our very narrow fields of vision, to create a world of silos and properness. Not. Thanks for reading ALL of my stuff, junk stream of consciousness or the more mainline journalism. A reader is worth a thousand shots of tequila, in my book.