Hospice Volunteer

Articles

by Mary Jo Bennett

"A 'GOOD DEATH' BITES THE DUST"

In my experiences as a hospice volunteer and with my own family members and friends, I've encountered a diverse cross section of death scenarios. Yesterday at a meeting of health professionals and clinicians active in end-of-life care, someone used the expression "a good death". I was stunned.

I'm not sure how long ago it was when I first heard that term. But over the years, the media has latched onto this phrase with such gusto that it seems most Americans would argue that it is their inalienable right to be guaranteed a "good death".

But life is full of paradox and death is no exception. Do we unconsciously expect that the circumstances of our dying could somehow be determined by forces outside of us? That if we faithfully pay our taxes or see our physician once a year - that if we follow all the rules and eat all our vegetables, that somehow death will be kind to us? And better yet, maybe side step us altogether?

Yes, there will be conditions and details unique to each of us as death approaches, but I do not see them as occurring outside our field of influence, nor do I think we will be guaranteed anything, no matter how desperately we believe we've earned it or deserve it. Unlike a chess game, we simply will not be able to maneuver all the pieces that will characterize our last days, and coming to terms with this is not easy for such a self-determined, control oriented culture such as ours. Passing legislature to legalize physician assisted suicide points directly to this myth of a "good death". Giving terminally ill people the means to predetermine how and when they will die, does not eliminate all the ramifications the patient, friends and family members must deal with in contemplating suicide. Control can only go so far.

As I touched upon in my opening, there are many ways we can enter into this deep mystery we call dying. There seems to me a natural link between these final months, weeks, days or hours and the life that has led up to it. And this interdependency exists much deeper than the skin deep emphasis so played up in our death denying culture. Although the pragmatic and popular notions of how best to live a long and healthy life, while keeping dying in mind (i.e. nutrition, exercise, stress management, advance directives, POLST etc.) are still valid and valuable, old age, sickness and death will trump even the best player's hand. How we meet the circumstances of this last and paramount phase of our journey, will be solely up to us. So although the particulars of our dying experience may come as a surprise to us, presenting pleasant and unpleasant sensations, shifting moment to moment, we can learn how to welcome them all, embraced in a spirit of deep trust that the way things are, are exactly how they are meant to be. Now this takes practice and as viable frame of reference, may require some advanced attention and mindfulness, before all hell breaks loose.

Ask a roomful of end-of life care providers to tell their stories and you most certainly will hear jaw dropping details of high drama and crisis management in almost each and every one. We die as we live, with a confluence of contradictions and conflicts. And we do it the best we can, with the skills we have available to us at the time.

Do we really want our caregiver, hospice nurse or social worker critiquing our dying experience with his or her own subjective standards of "good" and "bad"? At such a vulnerable, wide open time in our lives, do we really want the people who are caring for us predetermining what kind of death they would like us to have, so that at the end of the day, they can pat themselves on the back because we met all their benchmarks for a "good" death?

Rather I think we need to adopt the attitude that Frank Ostaseski, an eminent teacher in end-of-life care, termed as the "Don't Know Mind." In other words, can we enter into someone's dying experience with a totally open heart, allowing whatever unfolds for them to simply be as it is, without overlaying it with our unexamined beliefs, fears and expectations? Can we bear witness to another's suffering with our full presence and compassion and accept it as perfect in that moment, without wanting to change the slightest detail? That doesn’t mean we don't adjust their medications or in some other way respond to the situation skillfully. All this would take place in the moments following that deep connection with and acceptance of "what is". This place of "don't know mind" - of mutual vulnerability and transparency, where caregiver and patient meet on a level playing field - is the only soil fertile enough where seeds of true healing for both individuals can be sown.

Next time you hear someone utter the "good death" mantra, don't seize up like I did. Stop the conversation cold and ask questions. Penetrate this persona with a floodlight of playful curiosity. Let's all do our part to safeguard the consumer, taking yet another outdated label - "the good death" - off the shelf and out of the marketplace.

by Mary Jo Bennett

"DEATH AND DYING:
COMING OUT OF THE CLOSET"

Death and dying - once taboo subjects are becoming increasingly relevant for the Baby Boomers and their aging parents. Research conducted by the National Hospice Foundation found that Americans are more likely to talk to their children about safe sex and drugs than to their terminally ill parents about end-of-life options and preferences. The media, however, is helping to close in on this gap, offering a vast array of resources, ranging from documentaries portraying human stories of the dying, their families and their caregivers as they struggle to balance medical intervention with comfort and humanity at the end of life to literature describing the medical, legal and public policies, which define the cultural constructs that have shaped how we die, as well as addressing what can be done to improve our society's approach to dying.

Considered to be the model for quality, compassionate care at the end of life, hospice care involves a team-oriented approach of expert medical care, pain management, emotional and spiritual support expressly tailored to the patient's wishes. Hospice is a concept of care that enables the terminally ill to achieve the best possible quality of life during the final weeks or months before death. The hospice program where I volunteer, offers this definition: "Affirming life, while recognizing that dying is a natural process, hospice care neither prolongs life nor hastens death." Hospice focuses on human values that go beyond the physical needs of the patient. In doing so, these programs and services not only affirm the inherent dignity and worth of every individual, but they also demonstrate a reverence for life in all stages.

Nationally, the country's 3,300 hospice programs (the estimated number for operational hospice programs in 2003) provided this type of care to 950,000 dying Americans last year, according to data from the National Hospice and Palliative Care Organization. The Hospice Foundation of America estimates that there are 96,000 volunteers serving the dying across the country and these figures are growing annually.

Unfortunately, many patients die without ever being offered the tangible end-of-life support that hospice provides, instead they end up struggling with untreated pain and with side effects from futile curative medical treatment -- all this in addition to watching their families cope with the escalating demands of their care. Yet, slowly but surely, times are changing. We all have a role to play in making death and dying socially acceptable subjects to discuss openly.

So often the term "hospice" is shrouded with misconceptions and dread. Some people with terminal illness are reluctant to consider a hospice referral because they fear it implies that their doctor and family have given up on them. Physicians themselves have often delayed referring patients to hospice for similar reasons - doctors are committed to saving lives and curing disease. Changing the course of their patients' care, from curative to comfort care, is tantamount to failure for some physicians. This is often the reason why hospice teams receive many of their patients in the final days, or even hours, of a person's life, when the full potential for assisting the patient and family during this crucial time has been lost.

The difference between curing and healing becomes a pivotal issue in the dying process, especially as it relates to the hospice philosophy as a whole. To be eligible to receive hospice services, which is entirely covered by the patient's Medicare benefits, as well as by many insurance companies, the physician must certify that the patient has a life expectancy of six months or less and that no further curative measures are being sought.

As the emphasis of treatment changes to palliative or comfort care, an entirely new vista of opportunities is opened up. The vast amounts of energy and resources that have been previously channeled towards various treatment protocols and managing their side effects can now be freed up for other purposes. With the full support of the hospice team, the patient and loved ones are encouraged to address more personal issues - emotional and spiritual concerns and questions that may have been overlooked or simply avoided in the earlier stages of the illness.

As a hospice volunteer, I feel it is important to provide support in exploring these areas. The tool that has been most successful in facilitating this (and which every hospice volunteer is trained to do above all else) is to listen. By actively listening to the dying, not only am I able to learn more about who they are, separate from their diseases, but I can also identify specific areas of concern that hospice can then address as a team. As I sit by a bedside or favorite chair, quietly listening as someone reflects upon the salient aspects of her life, her lack of appetite or her night of restless sleep, this enables me to offer some modicum of comfort. It is not that I "do" anything of great significance; my simply being there and listening is enough.

Because I am typically called into patients' homes to provide a couple of hours of respite relief for the primary caregiver, I have ample opportunity to visit with patients in a casual and friendly capacity. Depending on the needs and preferences of the individual, I can either chat, read to them, offer a gentle massage, brush their hair, wipe their brow, breathe with them or pray with them. Although I cannot assist in measures that will reverse their disease process and "cure" them, I can explore as many other areas as possible that may contribute to their well-being. Listening with a caring and compassionate heart goes a long way to this end.

In whatever ways we pursue a greater understanding of issues related to death and dying, it is in our best interest to move forward, as death is something we all must face, sooner or later. Through self-education and the sharing of our experiences, we can collectively contribute to redefining our society's approach to compassionate care for the dying.