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Posts Tagged ‘Elisabeth Kübler-Ross’

 

By Doug Smith, MDiv.

“When we label some deaths right,

and other deaths become wrong.

When we label some deaths good,

and other deaths become bad.

Living and dying create each other.

The easy way and the difficult way are

interdependent.

The long life and the short life are relative.

The first days and the last days accompany each other.

Therefore, the true caregiver of the dying does all

that needs to be done without asserting herself,

and saying all that needs to be said without

saying anything.

Things happen, and she allows them to happen.

Things fail to happen, and she allows them to fail

to happen.

She is always there, but it is as though she is not there.

She realizes that she does nothing,

yet all that needs to be done is done.

In letting go,

there is gain.

In giving up,

there is advancement.

Don’t practice controlling.

Practice allowing.

Such is the mystery of happiness.

Such is the mystery of wealth.

Such is the mystery of power.

Such is the mystery of living and dying.

Excerpt from:  Caregiving:  Hospice-proven Techniques for Healing Body and Soul.

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Light and shade

Light and shade (Photo credit: Ennor)

Death is the omega of our existence, the vanishing point toward which all our moments rush.  Death is the price exacted by life — which always, without exception, is a fatal condition. . .

Yet who really understands that they will die?  Even those who have encountered the reality of death rarely do, other than in flashes.”

~~ Tracy Cochran & Jeff Zaleski, In Awakening to the Sacred in Ourselves

Do not wait until it is too late. . . allow yourself to be open to more than flashes of our nature.

Cultivate spaciousness in inhabiting the pause between breaths.

 

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Hiding

Hiding (Photo credit: Pam’s Pics-)

“Everything is meant to be let go

of that the soul may stand in

unhampered  nothingness.”

~~Meister Eckhart

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“How, then, do we know when a patient is giving up “too early” when we feel that a little fight on his part combined with the help of the medical profession could give him a chance to live longer?  How can we differentiate this from the stage of acceptance, when our wish to prolong his life often contradicts his wish to rest and die in peace?  If we are unable to differentiate these two stages we do more harm than good to our patients.”

~~Elisabeth Kubler-Ross, On Death and Dying

AAAAAAaaaaaaaaahhhhhhhhhh…..

I know for many of us, it would be hard to hear that someone was “choosing” to not do everything in their power to stay alive… like, in some way they were making a choice to leave us. . .

But we forget, when a person has decided not to continue treatment, they have been and continue to grieve the loss of everything in life. . . the sight of crocuses popping out of the snow, the sunset through the tops of trees, the smell of their favorite food being cooked, the warmth of our hand in theirs.

It is a time of walking a strange balance, between accepting what is and being a continued advocate.

But, I think in the accepting of what is and being present to the now the person who is ill can make the decision to live in the now and have time with us than to continue treatment that might actually take them from us earlier.

It is a difficult time for everyone involved and yet, with open communication, it can be a time used to say what needs to be said, to spend the time we maybe didn’t have time for in the past, and to simply be together, focusing on our relationships rather than continuous trips to the doctors, hospital, etc.

I know many people who are especially early in their grief journey might disagree; they might want that person back more than any thing else in the world.  I appreciate that feeling.  I’m sure I’ve been there.  And I heard from patients who have expressed the wish that their family would just “let them go” and relax so that they could make the transition into active dying that they need to do.

Too often I heard stories around the clinical team meeting and from support group members that it was when the nurse came in to talk to family, or when the spouse fell asleep, or when they went to the chapel to pray or ran to get coffee that the person died.  At those moments, the bonds are slightly looser, their is more space in the relationship and the hold to each other is not so strong.

But to me that seems natural.  Totally engaged in a conversation with and just simply being with a friend and knowing it was time to leave, but not wanting to leave the safety, comfort, and love of the interaction.  And something happens… the phone rings, the kids come home, someone goes to make tea or use the washroom, and there is a a slight and temporary relaxing of the connection. . . and the invitation that it is okay to leave.

And some times, it takes great courage in those moments to move beyond the safety and warmth of the connection to venture out into the world and journey.

As we sit with someone who is living their dying and you have difficult moments, remember that they will not only be venturing from the safe comfort and love of your relationship and it has to be more bittersweet than anything in the world.  But it is also in our ability to have a soft and gentle touch that we can allow them to leave us with grace, dignity, and much less struggle and pain.

 

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Joan Halifax with Tenzin Gyatso, the 14th Dala...

“One thing that continually concerned me was the marginalization of people who were dying, the fear and loneliness that dying people experienced, and the shame and guilt that touched physicians, nurses, dying people, and families as the waves of death overtook life.  I sensed that spiritual care could reduce fear, stress, the need for certain medications and expensive interventions, lawsuits, and the time doctors and nurses must spend reassuring people, as well as benefit professional and family caregivers, helping them to come to terms with suffering, death, loss, grief, and meaning.”

Joan Halifax, Being with Dying

Roshi Joan doesn’t say in her book when she is talking about… was it in her early career when she and Stanislav Grof were working with dying people or when… but think about this in terms of Elisabeth Kubler-Ross‘ work from 1969 and since…

I wonder if someone had the money and time to do the research, if we looked at how the dying are treated today to see if there were vast improvements…

I don’t mean in the technology to keep someone alive, I mean in our ethics in helping them live how they want to… in our compassion for being present to them and their needs.

And I don’t mean in home hospice care… I mean in institutions, in hospitals…

I have recently had a “spectator” view of care… for a patient who was unable to share his/her needs because of cognitive functioning.. medical test after medical test, procedure after procedure, in a sterile teaching hospital with no one at the helm for his/her care.

Different people telling different staff different stories all day long for weeks.. actually a few months.  And staff that loved this person supported each other, not a lot from management other than to allow them to keep going in to see this person at the hospital.

I don’t know if our ethics will ever keep up with our technology… I don’t know how it would at this point but what I do know is that fundamentally, whether we are in spiritual care, physical care, or mental/psychosocial care, we have a duty to be present to the person who we are serving first and foremost.  And we need to look at moving from “do no harm” to “helping to meet the greatest good” — however that is defined by the person.

We are all only one diagnosis, one dis-ease, one breath, one day away from our own dying, illness, and aging… the more we start to face that, the more we will start to attend to those who are already “more there” than we are today.  Only then will we truly be able to give compassionate care.

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“I saw with her, and when she held my hand she said, “You have such warm hands.  I hope you are going to be with me when I get colder and colder.”  She smiled knowingly.  She knew and I knew that at this moment she had dropped her denial.  She was able to think about talk about her own death and she asked for just a little comfort of companionship and a final stage without too much hunger.”

~~Elisabeth Kubler-Ross, On Death and Dying

So after I picked the title, I wondered, which “D-word” was I referring to… death or denial.

And I wonder why we have to have things our way?  Well, I know why… I guess I just wonder why we have to make people die the way we want them to. . .

As an end-of-life care professional, I have preached to not use euphemisms and to say the words dying, dead, death, cancer, AIDS, etc. but whose issue is that?  If it is an adult, do we really have the right to rob someone of the ways they are trying to take care of themselves on their journey?

Tonight I am thinking about this the way I am about the article I wrote not too long ago entitled stop all the self-help.    Is there a subtle aggression when we tell people how to do things like their dying or healing and is this an area that we need to have self-compassion and compassion for those we are with?

I think it’s an interesting idea.

When I hear conversations about someone I know with dementia, I often think, who are we to try to pull them back into our reality and tell them their world-view is wrong?

Maybe as helping professionals, loved ones, caregivers, etc we should look at those we are with in the same manner.

What does it do for us to have some not be “in denial” of a situation like their dying?

Don’t we know that on some level, whatever level that is, the person who has an illness and is dying almost always knows before the doctor’s appointment, before the lab results, what is going on..

And of course, there is the whole balance between “denial” and “hope”… and I am sure that will be a post for the future.

But for now, can we practice some acceptance?

Elisabeth’s patient knew that the end was coming at some point. . . isn’t it more important that she trusted Elisabeth enough to want her to share in the end, than to say the words, “yes, i know I am dying?”

 

Note:  I will be away on retreat for the next week.  I wish you all well and I hope you enjoy the articles that I have left in my stead.

May sorrow show us the way to compassion

May I realize grace in the midst of suffering

May I be peaceful and let go of expectations.

May I receive the love and compassion of others.

With love and deep gratitude, Jennifer

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“What happens in a changing field of medicine, where we have to ask ourselves whether medicine is to remain a humanitarian and respected profession or a new but depersonalized science in the service of prolonging life rather than diminishing human suffering?”

~~Elisabeth Kubler-Ross, On Death and Dying

We should still be asking ourselves this question.

But Elisabeth didn’t stop there.

“If we could teach our students the value of science and technology simultaneously with the art and science of inter-human relationships, of human and total patient-care, it would be real progress.  If science and technology are not to be misused to increase destructiveness, prolonging life rather than making it more human, if they could go hand in hand with freeing more time rather than less for individual person-to-person contacts, then we could really speak of a great society.”

I love the conscience that Elisabeth brings to her discussion.  She doesn’t just talk about what the life-world of the patient is… she goes so much farther, as if that wasn’t enough.  She looks at the societal ramifications of our fear of death.  She looks at how our science and technology is light-years ahead of our morals and ethics that need to be fostered in step with our technology.

She talks about the real blocks to great quality care. . . starting with training. . .

“They [students] learn to prolong life but get little training or discussion in the definition of ‘life’.”

I know, you are asking yourself, where are those darned stages… hmmm, that’s the point… look how much we have lost in only being focused on the stages. . .

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“If we cannot face death with equanimity, how can we be of assistance to our patients?”

~~ Elisabeth Kubler-Ross, On Death and Dying

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When discussing a case in her book, On Death and Dying, Elisabeth Kubler-Ross states that her patient had “anger displaced in all directions and projected onto the environment at times almost at random.” She discusses this patient’s feelings of “anger, rage, envy, and resentment.

But more importantly, she says this next:

“The problem here is that few people place themselves in the patient’s position and wonder where this anger might come.”

Did you ever stop to think about this?

I’m not the nicest person when I’m at the dentist office… I’m fearful, probably in pain when I arrive, projecting into the immediate future, worried, did I mention in pain?

How often do we stop to think about how someone is feeling and how it might be justified, to them?  Not right or wrong.  And I’m not even saying that we have to condone it, just…. wow, I can see how she might feel this way… I wonder what that’s like for him…

We live in a world where it is too easy to throw some sort of label on them. . . denial, angry, non compliant, depressed, borderline, etc.  And don’t get me wrong, I know people have life threatening problems that need help. . . there is no denying that.

But what happens when we are more concerned with treatment planning than we are than attending to the person from whom we sit across?

I have to believe, no matter how long I meditate, no matter how many chants, prayers, or hands I have to hold, I might feel anger if I knew that my death was coming.

And let’s look at when Kubler-Ross was working with patients… before I was born.  Think about the de-institutionalization that happened just in the 80s because we thought people’s care was not humane.

This was the end of the 60s, when doctor’s didn’t have to have informed consent.  When they didn’t tell their patients what was going on with them or their test results.  This is when people did whatever their doctor’s told them to; no finding a second opinion.

These were people who were gravely ill, who weren’t given treatment options… let alone anyone saying to them, you know, you could go home with these people called hospice and be comfortable at home with your loved ones and die peacefully.

We judge these words by our world today, that has come a long way, in some respects.

I’ve read some angry accounts of Elisabeth’s work and I feel badly for those people who have written them.  No, I don’t agree with some of the things she has written and I certainly don’t understand how she could have helped to write On Grief and Grieving on her death bed when there was already so much confusion about her work.

But I do know this… we could still be in that dark place if not for her “at the time’ pioneering work.  And given that most doctors today still don’t need to have a course in death and dying, I would prefer that they have Elisabeth’s work in their bag of tools than just what big pharmacy tells them about magic pills and new techniques to try.

If you are a caregiver of any kind, the next time you start to feel yourself tighten because of the anger, frustration, annoyance, or other difficult emotion from the person you are caring for, think of this:

Elisabeth suggested that this was the patient’s “cry, “I am alive, don’t forget that.  You can hear my voice, I am not dead yet!”  And when you think of it, think about how many quote the lines from the poem, Do Not Go Gentle Into That Good Night by Dylan Thomas.

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“Whether the patient is told explicitly or not, he will nevertheless come to this awareness and may lose confidence in a doctor who either told him a lie or who did not help him face the seriousness of his illness while there might have been time to get his affairs in order.”

~~ Elisabeth Kubler-Ross, On Death and Dying

So, stage one is supposedly denial.

I really like this part of the book.

She says that there is a direct proportion of denial in the patient as their is in the doctor.

If we cannot handle ourselves or if we cannot handle feelings about death, or we have not dealt with the important losses in our own lives, how can we be there and be fully present and supportive of our patients?

So whose denial is it?  I think it is ours collectively.

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