we’re now evaluating this program

The three-month NODA pilot program ended on January 31. Four third-year nursing students are working with Darcee Bidgood to develop an evaluation package consisting of questionnaires and structured interviews. The target date for a final report is March 15. In the meanwhile, please direct your questions about this and other volunteer programs at Royal Jubilee Hospital to Kathy Nies, Manager of Volunteer Resources (kathleen.nies@viha.ca).

a contemplative approach to training and supporting EOL volunteers

Scherwitz, L., et al. (2006). A contemplative care approach to training and supporting hospice volunteers: a prospective study of spiritual practice, well-being, and fear of death. Explore (New York), 2(4), 304-13. Institute for Health & Healing, California Pacific Medical Center, San Francisco. Abstract.

BACKGROUND: Inspired by a 2,500-year-old Buddhist tradition, the Zen Hospice Project (ZHP) provides residential hospice care, volunteer programs, and educational efforts that cultivate wisdom and compassion in service.

OBJECTIVE: The present study was designed to understand how being with dying hospice residents affects hospice volunteers well-being and the role of spiritual practice in ameliorating the fear of death.

DESIGN: A one-year longitudinal study of two volunteer cohorts (N=24 and N=22) with repeated measures of spiritual practice, well-being, and hospice performance during one-year service as volunteers.

INTERVENTIONS: A 40-hour training program for beginning hospice volunteers stressing compassion, equanimity, mindfulness, and practical bedside care; a one-year caregiver assignment five hours per week; and monthly group meeting.

MAIN OUTCOME MEASURES: Self-report FACIT spiritual well-being, general well-being, self-transcendence scale, and a volunteer coordinator-rated ZHP performance scale.

RESULTS: The volunteers had a high level of self-care and well-being at baseline and maintained both throughout the year; they increased compassion and decreased fear of death. Those (n = 20) practicing yoga were found to have consistently lower fear of death than the group average. All rated the training and program highly, and 63% continued to volunteer after the first year’s commitment. The results suggest that this approach to training and supporting hospice volunteers fosters emotional well-being and spiritual growth.

First Nations patients and EOL care

From the November 2011 Report by the Royal Society of Canada Expert Panel on End-of-life decision making. >>>Full text.

First Nations’ perspectives on end-of-life care and related policies require special consideration in light of historical disadvantage and injustice. A literature review of end-of-life issues in the care of Aboriginal people highlighted the sparseness of rigorous studies in this field and noted that many traditional Aboriginal perspectives differ from the viewpoints of other Canadians (Kelley & Minty). Some elderly Aboriginals, for example, believe that truth-telling about diagnosis may be dangerous to one’s health, which contrasts with mainstream Canadian values, and further creates a challenging communication barrier at the end of life. There is also a diversity of beliefs between and within Aboriginal communities, owing to differences of “traditional, acculturated, or religious perspectives”.

Currently, many Aboriginal people living in remote communities are transported to large urban centres to die, despite a study showing that the majority of Aboriginals interviewed would prefer to die at home, in the company of friends, family and their culture. It is crucial that non-Aboriginal Canadians seek to better understand the unique and diverse preferences and values of Aboriginal people toward the end of life so that their interests are better served. [Researchers have] outlined important guidelines for caring for Aboriginal people, including: respecting the individual; practicing conscious communication; using interpreters; involving the family; recognizing alternatives to truth-telling; practicing non-interference; and allowing for Aboriginal medicine.

Kelley, L., & Minty, A. (2007). End of life issues for aboriginal patients: a literature review. Canadian Family Physician, 53, 1459-1467.

visiting with patients of Japanese descent

Another in a series of articles to help sensitize us to customs regarding medical care, death, and dying for people from unfamiliar cultural backgrounds. Find previous posts on Dec 16 (Muslims, Sikhs) and Dec 18 (Asia-India Hindus).

The following is excerpted from Waxler-Morrison, N. (2005). Cross-cultural caring [in Canada]. UBC Press, chapter 5.

Family members play an active role in providing care during hospitalization, washing clothes, bringing meals, and staying with the patient for long periods of time.

Visitors are expected to bring gifts, preferably of a perishable nature such as fruit or cut flowers, which symbolize the temporary nature of illness and betoken of speedy recovery. Potted flowers, for instance, would inappropriately suggest a lengthy or permanent illness.

New immigrants prefer to use their own nightwear because hospital gowns are considered to be impersonal and wearing one’s own clothes is thought to strengthen an individual’s sense of control.

Patients are generally considered by health professionals to be “ideal” patients: stoical, cooperative, grateful, uncomplaining, and unquestioning. …  Patients who have difficulty with English may be too embarrassed to ask for clarification and so agree to everything.

It is considered better to die at home than in hospital, and in cases of terminal illness in Japan, physicians may advise willing families to take the patient home. … When someone is dying, the family is responsible for contacting relatives and friends, who are expected to pay their last respects. Not visiting is likely to be interpreted as an expression of negative feelings.

Note from Peter: With the above in mind, it may be unusual to meet a person of Japanese descent during a NODA visit. But if we do, we’d might encounter a heightened sense of alone-ness in a patient who considers not being visited an embarrassment.

mindfulness meditation in the context of burnout and compassion fatigue

From a wide-ranging and well-documented review in Kearney, M., et al. (2009). Self-care of Physicians Caring for Patients at the End of Life. Journal of the American Medical Association (JAMA) 301(11), 1155-1164. This article has since been published as chapter 42 in McPhee, S., et al. (2010). Care at the Close of Life: Evidence and Experience. McGraw-Hill. >>>Full text.

Although aimed at physicians, this article is of equal importance to nurses and other healthcare providers, especially for those who are new to their profession.

Mindfulness meditation refers to a process of developing careful attention to minute shifts in body, mind, emotions, and environs while holding a kind, nonjudgmental attitude toward self and others. There is increasing interest in the potential benefits of mindfulness meditation within medicine, and a number of North American medical schools, including the University of California at San Francisco, Harvard, Duke, and McGill, now offer courses in mindfulness meditation to medical students and other health care practitioners.

The practice of mindfulness meditation simultaneously raises clinicians’ consciousness of their inner reality (physical, emotional, and cognitive) and of the external reality with which they are interacting. It teaches the clinician to develop a “kind, objective witnessing attitude” toward himself or herself and helps to develop empathy for others.

Mindfulness meditation is now widely used by both clinicians and patients for its psychological benefits in a variety of health care settings, such as the Stress Reduction and Relaxation Program of the University of Massachusetts Medical Center. The psychological benefits include reducing anxiety; enhancing a sense of well-being; alleviating pain; increasing empathy; tapping repressed material in the unconscious; and gaining a greater sense of self-actualization, self-responsibility, and self-directedness. Although it has been unclear whether these benefits are from relaxation in general or mindfulness in particular, recent research suggests that they may, at least partially, be mediated by an increase in mindfulness.

Individuals experiencing burnout and compassion fatigue tend to display an increasing lack of compassion toward themselves and others and experience a shift of worldview, such as a loss of belief in basic goodness and spiritual interconnectedness. Mindfulness meditation is reported to develop and enhance a person’s capacity to feel both self-compassion and empathy for others. Self-compassion has been demonstrated to protect against anxiety and promote psychological resiliency.

what is “nearing death awareness”?

From a review of Final Gifts: Understanding the special awareness needs and communications of the dying (1992) by Maggie Callanan & Patricia Kelly (both long-time hospice nurses). >>>Full review

“[The authors] posit that we need to pay attention to the words, gestures, comments, utterances and indications of those who are close to death. Any and all of these forms of communication serve to inform caregivers as to what the dying person is experiencing or what he or she needs for a peaceful death. The language is often symbolic and may even appear nonsensical, but if listened to and gently examined it usually holds the clue to some element that is important in the persons passing.

“This is a rather revolutionary concept. It hints that we have some knowledge and control of the time and circumstances of our passing and will strive to let others know about it. The authors call this Nearing Death Awareness. We know when our death is near and have things to say about it! The communication is often in another language and requires a compassionate listener. Professionals should be tuned in to NDA and more importantly they should help family and friends to become aware of it as well.

“Pay attention to everything a dying person says. A pen and notebook might come in handy to write everything no matter how seemingly insignificant which at a later time might make sense.

* Important meanings in any message are possible;
* Watch for key signs and gestures;
* Respond to things that you don’t understand with gentle inquiries;
* Pose questions in open ended encouraging terms;
* Accept and validate what the dying say;
* Don’t argue or challenge;
* The dying may employ images and terms from work or hobbies to convey valuable information. (p. 225).”

serving the dying: a Buddhist perspective

Excerpts from a talk given by Frank Ostaseski, founding director of North America’s oldest Zen Buddhist hospice in San Francisco and currently director of the Metta Institute. Both Darcee and Peter have studied with Frank.

Every day I work with people who are dying, and some of these people are very tough. They may have been living on the streets for some time, or be angry about their loss of control. Often they have lost their trust in humanity; turning their heads to the wall, they withdraw. Most of them don’t care beans about Buddhism. These people don’t trust easily and if I am going to be of any use to them at all, I have to be particularly clear and honest about my intention; if I’m not, they will quickly sniff out my insincerity and sentimentality.

♥

A student asked, “What can Buddhism teach me about serving others?”
The teacher answered, “What others? Serve yourself.”
The student persisted, “How do I serve myself?”
Reply, “Take care of others.”

♥

When the heart is undivided, everything we encounter becomes our practice. Service becomes a sacred exchange, like breathing in and breathing out. We receive a physical and spiritual sustenance in the world, and this is like breathing in. Then, because each of us has certain gifts to offer, part of our happiness in this world is to give something back, and this is like breathing out. Our work, I think, is to get out of the way of our own innate wisdom and compassion — that simple human kindness — and allow our inborn ability to see what another needs to serve the dying and the living. >>>Full text.

midwives to the dying

Peter writes: I’ve only done one NODA visit (on New Years eve) but have had similar opportunities in another volunteer setting. After each such visit I’m left wondering about the patient’s ongoing welfare. Seeing someone just once may be better than not at all, especially, as under the NODA criteria, the patient would otherwise be without a private visitor. But what happens to the lone patient after our one visit?

It’s quite possible for someone deemed “near death” or “palliative” to live for days and weeks after our visit. What if there was a way for volunteers to visit again (and again) to establish a relationship (however fleeting in nature) and provide support until death arrives. Such an experience would provide volunteers — nursing or medical students in our program — with invaluable opportunities for clinical and personal learning.

There is a model for such a service. A 2001 joint pilot project by the Jewish Board of Family and Children’s Services and the NYU Medical Center’s Department of Social Services laid the groundwork for what is now the Doula to Accompany and Comfort Program. “Doula” is the ancient term for companions for women in childbirth, used here with the belief that care at the end should mirror the tender care needed at the beginning. Volunteers commit to a relationship with one person at a time, with weekly visits in their home, hospital, or nursing home.

Might it be possible (and desirable) for us to combine the best features of the doula and the NODA programs? Instead of seeing a patient just once for a brief time, a volunteer would commit to regular (weekly) visits at RJH or wherever the patient is transferred to, be it long-term care, home, or hospice. This way we’d truly accompany “our patient” on their journey towards death – for a day, a week, or a month.

What are your thoughts?

photo credit

allowing things to unfold in their own way

Further to Peter’s posts of Dec 24 and 30. Today, another visit with the Parkinson’s patient. Having had to time to reflect on previous visits, especially the one which ended abruptly when he experiencing a panic attack, I arrived with a simple agenda of mindfulness.

Mindfulness, according to Jon Kabat-Zinn, ”means paying attention in a particular way; on purpose, in the present moment, and non-judgmentally” (p. 4). Mindfulness, writes Syliva Boorstein, requires us to “open and receive the present moment, pleasant or unpleasant, just as it is, without either clinging to it or rejecting it” (p. 60).

I knocked, stuck my head into the darkened room, and asked whether it be okay to enter. We reached for each other’s hands and held them for a little while in a lovely gesture of re-connection. May I sit? Yes.

Silence.

How long have you been a Buddhist, he asked. (It took two repeats for me to comprehend the question.) I explained, leaning close to his face. And you, you were a surgeon, I inquired after another spell of silence. Yes, vascular surgeon, 40 years. Do you know Dr. K, I asked, recalling my recent operation. Big smile, Yes.

Silence.

We sat for quite a while, his eyes shut, his body relaxing. I paid attention to his and my own breathing, escorting my awareness to what was going on within me and around me. Noticing the impulse to chatter, I held back. Watching his facial expressions and other non-verbal signal, I left it to him to initiate further exchanges. Kabat-Zinn calls this “non-doing,” a practice of “lettings things be and allowing them to unfold in their own way” (p. 44).

Silence.

And so it went for another 15 minutes, until I had to leave. Again we held hands, looked and smiled at each other. As I placed my palms together in that ancient gesture of hello-and-good-bye, he too put his together and raised his head by way of a lying-down bow. One more wave and we parted.

Kabat‐Zinn, J. (1994). Wherever you go, there you are: Mindfulness meditation in everyday life. New York: Hyperion Books. Boorstein, S. (1997). It’s easier than you think: the Buddhist way to happiness. HarperCollins. image credit.

may you be blessed

with good health and happiness in 2012

Red Square in Moscow