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Category Archives: end-of-life care

ask a simple question

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I went to a residential training program a while ago. When I first spied the quantity of chairs in our class room (150, in fact) I began to fret: how can we have meaningful exchanges in such large a crowd. Little did I know.

During our first assembly the teacher asked us to reflect on what had brought us: “Why are you here?” He then passed around four microphones and invited comments. After a few responses he changed the question to “Why are you really here?”

Unsure of what to say, I nevertheless reached for a passing mic. The reason I’m here is to learn new skills, to be able to offer this training to … halfway through my earnest declaration, the teacher expanded the question once more: “Why are you really really here?”

After five years in end-of-life care I want to shift to being alive. Directly from my heart, bypassing reason and expectations, the voice of truth. In an instant, I felt as if the burden of and self-imposed penance for ‘being with dying’ had been lifted — replaced by fresh air to fill my longues.

“Always the beautiful answer who asks a more beautiful question,” writes e. e. cummings.

What would you say if asked, “What do you want to do? … and then … “What do you really really want to do with your life?”


the courage to grieve [no more]

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There’s one row on my bookshelf that I haven’t touched for some time. It sits prominently at eye level, affording easy access to any one of 60-or-so titles. Time has come to move them all a little lower. My interest has shifted.

“Grief is preoccupying and depleting,” writes Judy Tatelbaum,

Emotionally, grief is a mixture of raw feelings such as sorrow, anguish, anger, regret, longing, fear, and deprivation. Grief may be experienced physically as exhaustion, emptiness, tension, sleeplessness, or loss of appetite.

Grief sat at the top of my existence for several years, intense and multifaceted, affecting my emotions, my body, my entire life. It does so no more! Its place has been taken by quiet joy as I awake each morning.

Grief is the wound that needs attention in order to heal. … It takes courage to grieve. It takes courage to feel our pain and to face the unfamiliar. It also takes courage to grieve in a society that mistakenly values restraint, where we risk the rejection of others by being open or different.

I didn’t feel all that courageous when I sat out to grieve. Six or seven years ago, I was drawn to volunteer in the palliative care at a small hospital. A tumultuous love affair ripped open a life-time of unhealed wounds. Travelling back and forth to San Francisco I trained in end-of-life care and wept through most of the classes.

Teaching a workshop on “mindfulness at the bedside” led to paid hospice work. Dying, death, loss, anguish, and tears became my daily sustenance. After work I’d come home exhausted, collapsing into restoring sleep. Back the next day, I’d relish the ever-present pain — the comfort of being with people who thought grief was normal. We’d weep together, laugh, hug, and carry on. I thought I’d come to the top of my hill, that it didn’t get any better. Eighteen months later, that job ended. Shoved out the door, abandoned once more. A pain-filled year ensued, what HM The Queen would call an annus horibilis: selling home after 21 years, giving away books and furniture, bicycle-meets-Volvo accident with soft-tissue trauma, broken bones, neuropathic pain, walking stick, pain meds, more tears, touching bottom.

All that’s come and gone. The heart grows stronger and love returns. Love for self, for another, for this morning of pale spring sunshine. The plum-tree is in bloom, the neighbour’s pugs are barking at a truck a thousand times their size, and it’s time to go for breakfast.

source: Tatelbaum, J. (1980). The courage to grieve. New York: Harper & Row, pp. 7-8

the next time i complain …

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… about our health care system, remind me how dramatically different things work just around the corner from where we live. Beth Goldring is a 67-year old American, a former ballet dancer, university humanities teacher and human rights worker. She was ordained a Rinzai Zen nun in 1995 and currently directs Brahmavihara, a chaplaincy program providing services to destitute AIDS patients and their families in Phnom Penh, Cambodia. Here’s an excerpt from her newsletter —

“The government, without announcement, set a policy that anybody more than five days late for their medicines after three months is automatically cut from the rolls of patients receiving medicines (three-month appointments are now standard for people, except when the hospitals run out of medicines and can only give for shorter periods). Neither patients nor doctors were informed of this. We first heard about it from a doctor we are close to, who discovered it when he went to give medicines for someone and found the records gone.  

“Ta Heng, our beloved schizophrenic patient, went for medicines in early April only to find he could not receive them. We and Maryknoll [a Catholic mission] have covered his situation, which remains complicated, but we don’t know how many other patients have been cut off.  Most people who come late for their medicines are poor and come late because it is hard to find the money for transportation. I found out more recently that patients taken off the rolls theoretically can go to one government-run clinic for treatment; we don’t know yet if this actually works.”

Click here to see Beth’s annual support, budget, and donation site.


end-of-live care training

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As a 2006 graduate of the year-long Metta Institute program, I encourage you to attend the six-day Cultivating Presence Retreat, August 12-17 in San Rafael CA. 

Under the leadership of Frank Ostaseski and Ange Stephens, MA, MFT, the faculty comprises Angeles Arrien, PhD; Zoketsu Norman Fischer, Charles Garfield, PhD, Frances Vaughan, PhD, Ram Dass (via teleconferencing), and Guest Teachers. They’re competent, compassionate, and dedicated to experiential learning.

The program blends contemplative practices with pragmatic tools to offer a unique training experience. Metta Institute has an integrated approach to the emotional, psychological and spiritual dimensions of the dying experience that goes well beyond conventional medical models.

Great teachers, good food, restful environment and 50 CEUs for healthcare providers. Please give it your careful consideration. The attached poster has the details.


everything dies too soon [fact of life]

There’s a Christmas scene in the television series The West Wing (4th season, episode 10), in which Toby Ziegler walks his estranged father past a group of choristers performing in the lobby. “I’m having the strongest memory,” says his dad, looking transfixed. 

So, what are my tears about? Is it seeing two grown men standing near each other, the younger unable to forgive his father for all manner of transgressions, the older wishing to make peace before it’s too late. Is it about my own memory of turning against my father early on and being too self-centred to turn back before he died? Is it about wondering what it would be like to have (had) an old dad so that we could talk man to man, son to father, about life, loss, and love? Is it about caring for him as his heart weakened and his mind softened; as he withdrew into himself, living alone with a shepherd dog and a wire fence, letting no one come near but the woman who became his widow? Is it about envying friends who talk to me of their ageing parents with dementia and other infirmities — and me wishing that I could have (had) a dad and be able to take care of him?

Yes, I too am having strong memories. Fact is, he’s long gone and I’m still here. If I were to say all this to him right now, I think he’d point to the last lines in a Mary Oliver poem:

Doesn’t everything die at last, and too soon?
Tell me, what is it you plan to do
With your one wild and precious life?

source: Oliver, M. (1992). “The Summer Day” in New and selected poems. Boston: Beacon Press, p. 94. Full text


what will you do with this precious time?

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Eight-hundred-ten months, 3,240 weeks, 24,705 days, 385,688 non-sleeping hours: those are the statistics of my life thus far. According to the Life Expectancy Calculator I may live till age 81.89 (compared to 65 predicted for males born in 1943). Statistically, I’ve already outstayed my welcome. Realistically, numbers mean little should the proverbial brick fall on my head or a phone call inform me that the doctor is not happy with certain test results. In short, the clock is ticking as I write and nothing is for certain.

Which brings me to a common theme of this blog: how to live and die consciously. How to be present in as many moments, hours, and days in this life time. “It is not too late to take stock of our lives,” writes Kathleen Dowling Singh,

“even in the last weeks and days of terminal illness. And for those of us in the midst of life, in the apparent safety and security of our health, it is not too early. No matter how much time we have left to live, the answers to the following questions, voiced in the quiet honesty of our own hearts, provide direction to the rest of our living.” 

Her questions for us include the following:

♥ How have I used my gift of a human life?
♥ What do I need to “clear up” or “let go of” in order to be more peaceful? 
♥ What gives my life meaning?
♥ For what am I grateful?
♥ What have I learned about tenderness, vulnerability, intimacy, and communion?
♥ How am I handling my suffering?
♥ If I remembered that my breaths were numbered, what would be my relationship to this breath right now?

source: Singh, K.D. (2000). The grace in dying: how we are transformed spiritually as we die. HarperOne.


all set to go (nowhere)

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Last night I gathered a set of documents that has taken me years to complete — my last wishes and instructions in case of incapacity and death. I feel a bit spooked, yet relieved now that all that’s done. With members of my birth family living a continent away, it’ll fall on my friends here to look after things for me. Now they won’t have to guess what he would have wanted. The following are now in place:

• Last will (testament) deposited at a lawyer’s office. A recent revision involved a conversation with two friends to act as primary and back-up executors — they’ll be responsible to ensuring my affairs are settled according to my wishes.

• Instructions to my financial advisor to distribute funds in my retirement savings plan  to several non-profit societies.

• Health Care Representation Agreement — a legal undertaking signed by two friends, both nurses by profession, to act on my behalf when I’m unable to make decisions regarding long-term care and medical treatment. Copy to GP.

• Power of Attorney — another document in two further friends have agreed to conduct my financial affairs should I be unable to do so.

• Registration with the Eye Bank and Transplant Society to permit them to “acquire, process and distribute eye tissue [and] do corneal transplants and scleral grafts.” Such ‘harvesting’ must be done within hours of death. Copy to GP.

• Registration with the Body Donation Program in the faculty of medicine of our major university. They’ll have the option to receive the cadaver (minus eyes but with all other organs intact) at my estate’s expense and keep it for up to three years for use in teaching, training and research. After use, they’ll arrange for cremation of the remains and contact the executor/next of kin to collect the ashes.

• Finally, my directions ask my remains to be divided into two equal portions, one to be sent to my home monastery for interment, the other to be cast over the waters of the Pacific.

Phew! I still have to let people know where these documents are kept (many recommend the freezer compartment of the fridge which will be relatively safe even in case of a house fire) and to make a list of people to be informed when I’m near death or afterwards.

What about you? What are your last wishes? Have you explored this with your family and close friends? Written anything down? Almost everyone I talked to assumed that “someone will know my wishes.” Have you talked to them, I asked? No, not yet! 

These aren’t easy conversations to have. No one wants to talk about dying, but everyone who reads this will. How about you? What are our wishes and instructions?