Friday, November 29, 2013

End-of-life care: a webinar- lessons from the pros

Webinar on YouTube

Working together to best help families as they help prepare for the death of a loved one.
I decided, on a cold Friday afternoon, to watch this video. It features four men, all involved in various aspect of end-of-life care. (See their biographies below.) The webinar is 1:45 and very long. You can glean most of the content before the first hour. Here are my notes. It seems to be applicable to Ontario and Canadian end-of-life care, since it is theoretical in nature.

#1 Hospice perspective: Tom Friedman

Tom Friedman is involved in providing care to terminally ill patients (those with less than 6 months to live). The process should be co-ordinated care by staff; hospices, religious professionals, funeral directors, grief counsellors. All should be involved: care recipient, case manager (nurse) hospice physician, home health aide, volunteers, bereavement services.

It is important to provide co-ordinated care. Hospice functions along the line of goals of care.
The care recipient creates goals of care, with hospice supporting those goals. A team approach involves all stakeholders. They educate people about choices to be w ise, informed consumer of healthcare and support.

#2 Dr. Long- theologian, Presbyterian minister

The Role of pastor is often at time of death. However, in my Ontario experiences, many faith leaders visit their people at home, in retirement homes, and in long-term care.
He likes the collaborative approach, which is enviable for an even wider team. There is an irony of the end-of-life: a basic human simplicity combined with a human complexity.
We all die; we have this common. The Medieval church did the art of dying well.
Ars moriendi are two related Latin texts dating from about 1415 and 1450 which offer advice on the protocols and procedures of a good death.
They rehearsed for their own death, as thoughts and worries were predictable and they wanted to follow protocols.
In present day, we are aware of the complex side. We do it in our own ways in terms of physical, existential, relational and experiential side of death. Some go with confident faith, some with rage or fear, asking deep theological questions. There is no caregiver who has a panoramic viewpoint of all of these complexities.
We all have our angle of visions. At one level we talk of complimentary care, but it should be collaborative, with various points of view of those who participate.

#3 Tom Lynch -funeral director since 1974

His interest in death, dying, grief, and bereavement, came from a part time job his father gave him at his funeral home. Young people who work with him these days, may be 16, 17, 18 years old;
Dad loved flowers!
they place flowers in the right rooms, get coffee pots cleaned, and ensure that visitors are greeted. Some newly grieving widow, or orphaned adult child, will look them in the eye and say, "I couldn't have done this without you." The sense that you are capable, helpful and useful, to people at this difficult time in their family history, is overwhelming. It builds confidence.
The funeral home provides a psychologically safe harbour, in the bosom of care. They provide good information for what happens next.

Many are grateful for the local heroics of volunteers, medical staff, ERs, first responders, religious advisers during the disease trajectory.
Rule: the job of funeral director is to serve the living by caring for the dead.
Yeats: the only subjects that should be of interest to the studious mind is sex and death.
He has learned lots from the dying and the bereaved than anyone else.

#4 Allan Wolfelt - educator and grief counsellor

Even experts find some mystery, something to be pondered and not explained.
Bereavement means to be torn apart, with very special needs of the individual.
We must be open to the presence of our loss. The first thing you need to know about North Americans, others say, is that they believe you can escape death. At least, this is how we are perceived around the world. We bargain, search for eternal cures, demand expensive treatments or medicines.

Grief isn't linear. It may erupt less frequently over time. But grief needs to taken out from time-to-time, examined, and recognized, as we look back from time-to-time after losing a loved one. The US has mandated hospice after care, whereas, Canada has universal care, treating care recipients equally.
The responsibility doesn't end at the grave. It is important to create places of sanctuary where people can grieve well. Perhaps not, I believe, in a roadside memorial, scarring our highways and biways.

Friedman: In this country, in the US, the medical industry over decades has taken dying
I handed out daffodil bulbs to guests
and death away from people, and pretend, potentially, that we can live forever. It is a great disservice to society, dissociating children from being part of the complete circle of life, including death and dying.

All involved in hospice medicine, we recognize that 97% of people would prefer to die at home, and often it isn't the case. Recognising when medication and procedure risk outweigh the benefits, is a medical agenda, but they need to educate consumers. Prescribing meds, or assessing people physically, taking care of people as individuals, in their homes, getting involved with people who have life limiting illnesses, helping them to explore the emotional, the spiritual, physical, psychosocial issues, when navigating towards end-of-life, is key for all involved.

Closure for the deceased or the mourners?

 With a profound, loving relationship, you never feel closure, for you never stop mourning or heal over entirely. You continually honour, remember and feel the pain of your loss.

#4. There are no rewards for speed of moving through your grief. We should not be attached to outcome, or divine momentum. We need a shared space where a stranger can become a friend. No pressure to be cured from your grief. Grief counsellors are hospitality combined with sanctuary. Companion someone, rather than treat them as a patient, or long-term sufferer.

#3. Work, labour, tasking 

Geoffrey Gore said that grief work has less to do with the brain, and more to do with muscles.   Don't drag bereaved between the stations of healing. [ BTW Elisabeth K├╝bler-Ross' five stages are not a linear progression, this is something that has been greatly misunderstood, as she wrote in her later works.]
Photographic memories

Things happen as they are supposed to happen. Women tend to be bedside, men tend to plan for the funeral, in one opinion.
In the old days there was aVictorian year of mourning: you could laugh, weep at the wrong time, be disconsolate, or accomplish some emotional goal up until a year. Then you had to get back into the world. There is no timeline for grief. Melancholia was accepted.

#1. None of us understands what another is going through, even in similar situations. Everyone's grief journey is different from another's. People don't get over the loss of a loved one, and they don't 'move on' it's part of their life experience. Transformation occurs after you deal with a death in your family. It's not getting back to an old normal.

No one is the same after a death in the family

#2. The labour in addressing end-of-life issues: As a funeral director we are all for pre-planning of a funeral. Many say, "I don't want to be a burden." Another wrote that they wanted to be a burden, They wanted to be a burden and require loved ones go through the motions.

#3. Lynch, spends a good deal of time in Ireland, where they don't have a back hoe to dig a grave, the women lay out the dead, and they process the dead out to church from the funeral parlour. They walk, most often, shouldering the body from the door of the church, to the graveyard as pall bearers. The groups of people you lived, worked and played with will take turns shouldering you along that journey. Many will reuse old graves, burying loved ones on top of great or great-great grandparents. People are so bone-tired with the shovel work, almost no one seems, paying cuirt (court), which gives much power. The medicine in that is overwhelming. You're almost healed before you leave the gravesite.

#2. There are still labours to be done: casseroles, or visits, and to let those be predictable and taught, rather than improvised, so we don't do it wrongly. It's part of the processing.
Ceremony helps us know what to do when we don't know what to do.
Dad's urn
The rituals around dying and death, by minimising this in our culture. Too many times we do for one another, rather than emboldening grief-stricken people to do for themselves. Very nearly 50% of deaths end in cremation and that procedure is devoid of community impact. If we regard a good funeral as one that gets the dead and the living where they need to go, we will help the healing process.
Our powerful rituals are just repeated actions, they rest on great narratives so that the rituals tell stories.

Anticipatory grief, pre-grieving, finding meaning, recalling the life, activating support through the wake, coming together in context to support mourners - this is what we needs do. Symbols, and actions going from intellectually knowing some one is dead, to feeling the context and ceremony is complex. Complicated grief arises when we move away from ceremony and miss the meaning.
One ritual has movement, another stillness.
Dad's urn above, at his funeral.
Mom's there on the stool.
The first part of the ritual has movement, moving through hospice to the cemetery. Another is sitting still, experiencing the community moving together.
Blessed are those who mourn.
Kids are the best ones to teach us how to mourn: celebration or a party, or going fishing - the way grampa taught us.
Darkness is the chair upon which the light sits. 50:10 min.

Featured Panelists:
1. Robert Friedman, MD, FAAHPM: Dr. Bob Friedman is chief medical officer at Hospice Austin. With 17 years of experience in end-of-life care, Dr. Friedman provides comprehensive care while promoting best practices for the delivery of hospice and palliative care. 

2. Dr. Thomas G. Long: Dr. Tom Long is Bandy Professor of Preaching at Candler School of Theology at Emory University in Atlanta, GA. Known as the "preacher's preacher," he is author of many books, including The Witness of Preaching, Accompany Them With Singing: The Christian Funeral and the newly released The Good Funeral, co-written with Thomas Lynch.

3. Thomas Lynch: Tom Lynch is a writer and funeral director from Milford, MI. His books include The Undertaking, which became an Emmy Award-winning PBS FRONTLINE documentary. His latest book is co-written with Dr. Thomas Long and called The Good Funeral.

4. Dr. Alan Wolfelt: Author, educator and grief counselor. Perhaps best known for his model of "companioning" versus "treating" mourners, Dr. Wolfelt is committed to helping people mourn well so they can live well and love well.

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