i can’t *fix* your suffering

Further to Peter’s post of Dec.24. Today was my third visit with a patient who’s slowly dying of a brain-degenerating disease. During the last visit I managed to make out some of his slurred speech and he’d smile when I got it right. Each time I felt rewarded for my efforts, encouraged in my intention to bring him comfort. Per his request, we meditated together. I asked that he bring awareness to his in-breath, follow the breath into his body, and notice the exhale. He readily took to this and I noticed a calming of his fidgeting. After a while he said “that’s enough” and we agreed to meet again.

This morning, as I pulled a chair to his bed, he appeared agitated, speaking rambling sentences I couldn’t make sense of. Abruptly he turned his head away from me and his breathing became laboured. Reaching for the metal railing of the bed, he pulled himself on his side facing me, letting one arm hang toward the floor. “Can you breathe better this way?” I asked. Yes, he said. We sat for a while in silence, when suddenly his breathing became loud and panicky and he pointed to the nurses’ call button.

This was not what I’d expected! I’d come to continue from where we left off yesterday. But instead of entering the room mindfully – observing afresh what lay before me — I charged ahead in the belief that some more meditation would make things better for him. Rachel Naomi Remen, MD calls this approach fixing: “When I [try to] fix a person, I perceive them as broken, and their brokenness requires me to act. When I fix I do not see the wholeness in the other person or trust the integrity of the life in them.”

Did I really think I could ease this man’s suffering with one or two visits? Upon reflection, I’d become caught up in the excitement of being called to the bedside, of being needed somehow. “Fixing is a form of judgement,” Remen continues. “All judgement creates distance, a disconnection, an experience of difference. … We cannot serve at a distance. We can only serve that to which we are profoundly connected, that which we are willing to touch.”

Remen posits serving as a more authentic way of being with a person in distress. “When we serve, our work itself will sustain us. Service rests on the basic premise that the nature of life is sacred, that life is sacred, that life is a holy mystery which has an unknown purpose.”

My next visit is planned for tomorrow …

talking with a terminally ill person

When you think you want to say → Try this instead:
You are going to be just fine. → Are there some things that worry you?
You can beat this! → It must be hard to come to terms with all this.
What do the doctors know? You might live forever. → Do you think the doctors are right? How does it seem to you?
Don’t be glum. You will get well. → It must be hard. Can I just sit with you for a while.

From The Handbook for Mortals: Guidance for People Facing Serious Illness by J. Lynn and J. Harrold (Oxford University Press), full text available on-line. Joanne Lynn, MD is President of Americans for Better Care of the Dying; Joan Harrold, MD is medical director, Hospice of Lancaster County, Pennsylvania.

the (in)adequacy of EOL instruction in Canadian medical schools

Matthews, A., & Greenspoon, J. (2011). A look at the essentials of care and the adequacy of instruction in Canadian medical school curricula. UBC Medical Journal, 3(1), 36-37. The authors are students at the Schulich School of Medicine & Dentistry, University of Western Ontario.

Abstract: Most Canadian medical students are interested in learning about end-of-life care. Recent research has explored the key elements involved in providing quality care to terminally ill patients and their families. Despite these new insights, limitations surrounding the provision of end-of-life teaching in medical curricula have left many residents feeling unprepared and uncomfortable in clinical encounters with patients that are near life’s end. Various medical programs have effectively augmented their curricula to deal with this issue. We hope that Canadian medical students and educators will reassess the quality of their end-of-life care instruction.

>>>Article in full.

EOL education fellowship program for medical students

The American Medical Student Association (AMSA) Foundation offers the AMSA—Vitas End-of-Life Education Fellowship program as a six-week intensive summer experience [in Fort Lauderdale, FL] designed to introduce medical students to end of life care issues in a way which cannot be found on the medical school campus. Vitas Innovative Hospice Care will coordinate a program packed with rigorous didactic sessions and a variety of field placements. Students will have the opportunity to learn from interdisciplinary hospice team members which may consist of doctors, nurses, social workers, chaplains, bereavement counselors, and volunteers. As with all clinical settings, the experiences will vary from day to day, and will include both in-patient and home visits, the routine and the unexpected.

Application details for the 2012 will be available in January.

christmas greetings to NODA volunteers everywhere

Almost everything you do
will seem insignificant,
but it is important
that you do it.

~Mahatma Gandhi

repaying great kindness

Peter writes: A few days ago I was asked to visit* a patient afflicted with a Parkinson’s-like neuro-degenerative disease. It is characterized by movement and cognitive dysfunction. Since its exact cause is unknown, there’s no formal treatment. It gets progressively worse with complications from choking and pneumonia, head injury, and fractures caused by falls. Death could come soon … or in two, three years.

I entered the darkened room and asked for permission to sit at the bedside. Before me lay a tall, muscular, grey-haired man in his seventies. The left side of his body seemed paralyzed while his right arm and leg restlessly shifted back and forth from under the covers. I could barely make out his speech and his eyes kept closing. (I learned later that both are aspects of the disease.) In my anxiousness to connect, I asked too many questions and soon learned to limit myself to short one-topic sentences and … to listen.

To listen by straining my ears and leaning towards him, looking for clues in his eye contact, smiles and frowns, hand movements, and blurred speech. We touched on his fear of dying and of being trapped in a body that no longer obeyed the commands from his healthy mind. After 25 minutes we agreed that I should come again. Leaving the building, I felt wide awake and gladdened by the prospect of, as we’d agreed, to “walk alongside on the path towards death.”

Zen teacher Joan Halifax writes that “Tibetan Buddhists say that we have all been one another’s mother in a previous lifetime” and encourages me to care for a dying person “as if I were the dying one’s mother and to see the dying one as [my] mother, saying silently to myself, ‘Now it is time for me to repay the great kindness of all motherly beings.’”

Halifax, J. (2008). Being with dying: cultivating compassion and fearlessness in the presence of death. Boston: Shambhala, p. 21. *This visit did not occur at the NODA site but at another hospital where Peter volunteers.

Canadian doctors urge us to talk about EOL care and dying

Excerpts from ”Why are we afraid of talking about death?” by Erin Aderssen in Globe and Mail, November 27, 2011. >>>Text in full

Too few Canadians have the conversation until they are scrambling to make decisions at that bedside moment. And yet research clearly shows that discussing and planning your death means your wishes are more likely to be followed. As well, family members experience less anxiety and depression in the aftermath, and report that the process is less agonizing.

This is a scenario Canadian doctors see too often: An elderly mother is dying in hospital, unable to clearly communicate; the family, in their grief, must make an emotional decision. Do they ask for a feeding tube? Do they want a ventilator to help her breathe? Or morphine to control the pain, even if it hastens her death?

“I have seen people in some just dreadful dilemmas and distress, thinking years after that they made the decision that resulted in the death of their loved one,” says Romayne Gallagher, a physician, and founding director of the division of palliative care at the University of British Columbia. “Most people find if they have some idea what their loved one had in mind, it makes a difference.”

Most Canadians, for instance, say they would like to die at home – and yet, according to research cited in a recent Royal Society of Canada report on end-of-life care, nearly 70 per cent die in hospital, often in intensive care units – although this number varies widely across the country. While lack of access to palliative care is a major problem, Canadians are not planning how they want to die, at a time when technology has become so adept at keeping them alive.

An estimated 70 per cent of Canadians have no living will to set out their wishes when they can no longer voice them. Only 47 per cent have designated someone to make decisions on their behalf – and fewer than 44 per cent have spoken to a family member about their end-of-life care. This is why one of the most significant recommendations to emerge from the Royal Society report is that the public and the medical community both need to learn how to clarify these decisions – and learn how to have the “good death” sit-down. . . .

>>>additional resources on right-to-die, assisted death, cost of dying, Supreme Court of Canada, etc.

difficult communication issues for EOL volunteers

Planalp, S., & Trost, M. R. (2008). Communication issues at the end of life: Reports from hospice volunteers. Health Commun, 23(3), 222-233. Authors’ affiliation: University of Utah.

Abstract. The central goal of this study was to inventory and understand difficult communication issues or dilemmas that arise among hospice volunteers, patients, and their families. Hospice volunteers reported, based on their observations and experience, that denial was the most common communication issue or dilemma for patients, family, and caregivers, followed by negative feelings and family conflicts.

Volunteers reported that for themselves, the most common problem was patient impairments such as Alzheimer’s or Parkinson’s disease that made conversation difficult. Powerful and wide-ranging emotions were also challenging for dying patients and their caregivers. Problematic integration theory and terror management theory could be developed further by expanding the role of emotions, and trauma management theories could be enhanced by developing deeper understanding of how the loss of social bonds may be as traumatic as the loss of life.

attitudes and practices of Asian-Indian Hindus toward EOL care

As a NODA volunteer you’re likely to encounter patients from cultural and religious backgrounds that are unfamiliar to you. Here is the second instalment of articles to inform and guide you.

Deshpande, O., et al. (2005). J Am Geriatric Soc 53(1), 131-135. Excerpt.

There are a few points to bear in mind when participating in the care of Hindu patients toward the end of life. In accordance with karmic theory, illness, pain, suffering, and death are not seen as unique to the individual. Rather, they may be interpreted as the result of prior actions, in this life or a prior life.Thus, many Hindu patients develop a passive, almost accepting attitude toward these events.

Second, Asian-Indian family culture usually promotes familial decision-making in these situations. Often, the family may wish that the patient not be told the specifics of the illness and request that other family members make decisions following a specific hierarchy already in place. Third, instituting life-sustaining or prolonging procedures may be potentially viewed as interfering with an individual’s karma.

Finally, in the event of a terminal illness or death, there are certain rituals performed by the patient’s family.Allowing these to take place represents an understanding that families view these rituals as smoothing the transition from life to afterlife for the dying individual. The performance of these rituals by family members is their dharmic duty. Interfering with this could potentially incur bad karma for the family members and create tension for them and the healthcare team.

One of the most important beliefs of Hindus is that a dying individual’s thoughts and words should be focused on God because it is a strong belief that the nature of one’s thoughts at the time of death determine the destination of the departing soul—a concept highlighted by the following quotation:

Remembering me at the time of death, close down the doors of the senses and place the mind in the heart. Then, while absorbed in meditation, focus all energy upward to the head. Repeating in this state the divine Name, the syllable Om that represents the changeless Brahman, you will go forth from the body and attain the supreme goal. (Bhagavad-Gita, Chapter 8:12–13).

Culturally, family members of a dying individual may manifest this by reciting prayers or hymns around them and placing holy water or a holy leaf (tulsi, basil leaf) on the person’s mouth.

http://www.ncbi.nlm.nih.gov/pubmed/15667389

Muslim attitudes and practices regarding EOL care

As a NODA volunteer you’re likely to encounter patients from cultural and religious backgrounds that are unfamiliar to you. Here is the first instalment of articles to inform and guide you.

Kemp, C. (2005). Cultural issues in palliative care. Semin Oncol Nurs 21(1), 44-52.

Abstract. Culture plays a critical role in how patients, families, and health care providers view the end of life. Cultural competence in end-of-life care includes knowledge and experience and working in cross-cultural situations. Increased culture-specific knowledge will provide … a basis for beginning exploration of individual or family beliefs.

Sarhill, N., et al. (2001). The terminally ill Muslim: death and dying from the Muslim perspective. Am J Hosp Palliat Care 18(4), 251-5.

Abstract. Islam holds life as sacred and belonging to God and that all creatures will die one day. Suicide is forbidden. Muslims believe death is only a transition between two different lives. The terminally ill Muslim desires to perform five ritual requirements. Do not resuscitate (DNR) orders are acceptable. A deceased Muslim must always be buried after being ritually washed and wrapped. There are different Muslim schools of thought, but they are united regarding their views on death and dying.

Gatrad, R., et al. (2003). Palliative care for Sikhs. Int J Palliat Nurs 9(11), 496-8.

Abstract. This article provides an overview of the palliative care needs of Sikh patients. It describes the basis of Sikh beliefs and practices and discusses practical aspects of caring for terminally ill Sikh patients and their families. Issues before and after death are considered and the importance of an individual approach is highlighted.