DEATH AND DYING, A CONVERSATION AMONG MEDICAL PROFESSIONALS

Understanding our own mortality

Elizabeth Kubler-Ross (1975) states that “We cannot give loving and caring support to dying persons and their loved ones until we have faced our own death and mortality within the depths of our being.” (Miriam Jacik 1989, 257) See “A look at death and dying” questionnaire.

Addressing our personal beliefs and experiences of loss and death.

  • What losses have you experienced in your life? (a pet, a friend moving away, loss of extended family, loss of family of origin member, loss of present family, loss of significant job, loss of home, divorce, loss of physical functioning, etc.)

What were you taught about death as a child? Was death something to be feared? Was it a secret not to be spoken of? How were the dead spoken of? Was fear connected with death?

“A person’s faith and religious belief system are often a strong source of support during illness and in the face of death. It behooves the [medical professional] to honor this reality not only in his or her own personal life but also in the patient’s life. One does not have to share the same religious affiliation to be able to understand and accept another’s spiritual orientation.” (Jacik 262)

  • How then, are we to have this conversation? Recognizing that we have already been called to consider our own thoughts and feelings regarding death, our own and more generally, how do we engage with others?

“It is important to believe that one person can help another die well, much as one would have helped another to live well….human life is temporary… human beings are mortal… the journey through life is transient.” (Jacik 263)

A statement that describes what motivates the ministry that I do.

“Healthcare professionals, being part of a society that fears, avoids, and denies death, share the same fears and attitudes about death as those they are called to serve. Overcoming such negative attitudes about death requires a personal struggle with the issues of our own mortality, reflection on our personal fears of dying, and being in touch with or formulating our personal philosophy of life. The latter entails the topics of introspection that all people face: the meaning and purpose of life, the meaning of suffering and death, personal beliefs about God or some higher being, the place of God in one’s life, the hereafter, the forms of religious expression one uses, and one’s religious belief system.” (Jacik 257)

Jacik, Miriam. “Spiritual Care of the Dying Adult.” In Carson, Verna Benner. Spiritual Dimensions of Nursing Practice (Philadelphia: W.B. Saunders 1989)

Consider also the work of

Dr. Ira Byock, MD, Chair, Palliative Medicine, Dartmouth Medical School  – www.dyingwell.org

Meaning and Grief

Grief is an emotional response to loss – real or perceived, past, present or anticipated.

Humans seek meaning. One of a child’s earliest questions is, “Why?” She wants to know the meaning behind an event, the reason for a direction. “Why is the sky blue?” She is not asking a scientific question about how light is reflected and refracted and how the atmosphere becomes a filter for the dark void of space, which we then perceive as blue. You will loose her if you try to ‘explain’ in response to her ‘why’ question. She is asking what it means that the sky is blue. Similarly, when a child asks, “Where do babies come from?” he is not asking a biology question, but a meaning question, an existential, ontological inquiry into the origin of life.

We need for our lives to mean something, and that meaning usually (always?) derives from our relationships – with ‘the other’ and with self. When a person’s sense of self is disturbed, when important relationships are fractured, then life ‘loses its meaning’. Depression sets in coincident with this loss of meaning drawn from relationships. The loss may only be perceived by the depressed person, while all around still experience and value the relationship. Even when depression has a chemical component, there is typically experienced some psychological component of loss. Part of what is lost is meaning, and grief follows. If meaning cannot be restored, or new meaning found, then depression may set in.

Our ability to ‘do something’ in the world, to make or produce something, to ‘be a productive member of society’ is also about relationships – with self, others and the world. It’s about our ability to contribute, to ‘be useful’ to the other, to be needed. When men, in particular, retire, they often experience a loss of meaning, as their self-identity, and how they understood themselves in relation to others, was derived from work. Part of the ‘grief process’ in this instance will be to choose new ways of framing meaning. The joy one derives even from caring for a pet or tending a small garden, these are expressions of relationship which when lost will be missed – not only the act, but the meaning the act represented.

Of particular significance is the series of losses that come with aging – losses of ability, contribution, and independence. When a mother can no longer cook for her children or care for her grandchildren, she may experience grief. When a father can no longer provide, no longer ‘help out’ with projects around the house, he too may grieve. Next comes the time when they cannot do these things even for themselves, and roles reverse so that the caregiver becomes the receiver of care. This includes a loss of role, of identity, of independence, and perhaps even of dignity, modesty and self-respect. With each of these losses come a unique kind of grief.

Multiple griefs can pile up, much like other kinds of stress. Stress is a condition or feeling experienced when a person perceives that “demands exceed the personal and social resources the individual is able to mobilize.”  (Richard S. Lazarus)  The Holmes-Rahe Stress Scale is a useful tool for understanding the compounding effect of stresses over time. Loss and Grief function in similar ways, and often include specific stress elements in them, emotionally, mentally, and physically.

At a time of loss, people often ask questions of meaning – usually they begin with ‘why?’ or ‘how?’.

Why did this happen?  OR more pointedly – Why did God let this happen?

How will I go on?

What do you do when loss comes into your life? Take a moment to list a few of the losses that you have experienced at any time in your life, and then specifically in the last two years.

And it matters whether the loss was sudden and surprising, or known and a long time in developing.

An extended period of loss – such as a slow death from a debilitating disease – offers special significance to our grief. We this time can allow all involved opportunities to grieve slowly over time, to ‘adjust’ to ideas of a new reality and think things through. In this way, they may have more peace about the loss, and grow to a place of understanding with their questions. At the same time, this long, drawn-out process also may prompt some to experience greater suffering. A deep sadness comes with prolonged suffering, as one perhaps wishes ‘for it all to be over.’ Added to that is the fatigue that comes with suffering, caring, and grieving for weeks and months on end.

In his groundbreaking work on Logo Therapy entitled Man’s Search for Meaning, Viktor Frankl processes his experience in the Nazi concentration camps during WWII. What Frankl observed, very simply, is that those who found some reason to survive, did. In other words, those for whom life continued to have meaning. The meaning could be tied to family and friends, to life itself, to ‘resistance’, or even to work left undone, as it was for Frankl. Many human beings (there are always exceptions) want life to make sense, to have some kind of reason behind it. People say this about their periods of depression: “I needed a reason to get out of bed in the morning.” Don’t we all need such a reason, in some form or another? The challenge for people is that those things which used to provide meaning are 1) no longer effective, or 2) no longer there. The second is the case with grief and loss.

So, as we enter into caring relationships with others, we need to be aware of our own losses, their meaning for us and effect on us. We then need to be sure that these are able to illumine our interactions without infecting them. My grief gives me understanding and empathy for others, but must not be laid or projected onto the other and their experiences.

We also want to listen for expressions of grief and loss, giving the other opportunity to express these, and explore questions of meaning if they so choose. If we are anxious about our own loss and grief, then we will not have the capacity for calm presence as we listen to the other. Indeed, one of the ways our own loss and grief gains new meaning is when it is redeemed by enabling us to be present with/for the other in their times of need without our own needs controlling the interaction. We can not give meaning to the grief and loss of others. We CAN and should give them permission to explore and seek meaning in the midst of their own journey.

A reflection from faith

As we enter into this process, we bring our own understandings of God and God’s place in the world. The Christian tradition is one which has multiple expressions of how loss and grief can become opportunities for deeper meaning in life, in opposition to cultural presumptions that loss leads to a destruction of meaning.

Paul articulates that:

1 Therefore, since we are justified by faith, we have peace with God through our Lord Jesus Christ, 2 through whom we have obtained access to this grace in which we stand; and we boast in our hope of sharing the glory of God. 3 And not only that, but we also boast in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit that has been given to us. 6 For while we were still weak, at the right time Christ died for the ungodly. 7 Indeed, rarely will anyone die for a righteous person—though perhaps for a good person someone might actually dare to die. 8 But God proves his love for us in that while we still were sinners Christ died for us. (Romans 5)

This passage makes several points: 1) the suffering and loss experienced in the death of Jesus became redemptive because of God’s grace at work in and through those events, and 2) our own experiences of suffering (grief and loss) become an opportunity for us to grow toward hope. These two ideas are central to the Christian understanding of life in this world.

Additionally, we believe/understand that losses in this world are only temporary, and that an experience of life awaits us where there is no loss, grief, sorrow, tears or pain (Revelation 21:3-4). We need to be very careful in the midst of another’s grief. Proclaiming these truths to someone who does not already believe them rings very hollow. Rather, let our faith in them bring us comfort and assurance as we enter into the sufferings of others so that we are able to ‘not let our hearts be troubled, neither be afraid’, but rather provide a calm, steady, safe place in which others may explore their own deep questions and the meaning they may find in and after their experiences of loss and grief.

When the Well-Meaning Become the Grief Police    By Sara Perry

GRIEF AND LOSS – A BRIEF READING LIST

On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss. Elisabeth Kubler-Ross, Elisabeth Kubler-Ross (Author)

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 David Kessler.  David Kessler (Author)

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New York: Scribner. 2005. 

The Needs of the Dying. David Kessler. New York: Harper Collins. 1997.

Don’t Sing Songs to a Heavy Heart: How to Relate to Those Who Are Suffering. Kenneth C. Haugk. St. Louis: Stephen Ministries. 2004.

Grief, Transition, and Loss: A Pastor’s Practical Guide. Wayne E Oates. Minneapolis: Fortress Press. 1997.

Death and the Immanence of Hope, from A Balm for Gilead: Meditations on Spirituality and the Healing Arts. Daniel P. Sulmasy, OFM, MD. Washington DC: Georgetown U Press. 2007.

Man’s Search for Meaning. Viktor E. Frankl. Boston: Beacon Press. 4th ed. 2000.

Hope in Pastoral Care and Counseling. Andrew D. Lester. Louisville: Wesley John Knox Press.1995.

Good Grief. W. Sydney Callaghan. London: Collins. 1990.

Good Grief. Granger Westerberg. Minneapolis, MN: Fortress Press. 2011.

A Grief Observed. C. S. Lewis. Toronto: Bantam Books. 1961.

Tuesdays With Morrie. Mitch Albom. New York: Doubleday. 1997.

Grief Therapy. Karen Katafiasz. St. Meinrad, IN: Abbey Press. 2004.

On the Anniversary of Your Loss. Linus Mundy. St. Meinrad, IN: Abbey Press. 2007.

For a pdf of this page click here: GRIEF AND LOSS – A BRIEF READING LIST

Entropy and New Life

Entropy

The root word is the Greek trope – meaning “to turn” – you can apotrope, to turn away – you can entrope – to turn around. Entrope can also mean to shame someone, or to reverence another. So what is the thought connection between turning around, shaming, and reverence? My guess is this: To “turn around” is to turn from one orientation toward another. If it is also turning toward shame, this would be a degradation of ego. What is required of reverence but a degredation of focus on ego – a turning away from self and toward that which (or the one who) is the object of reverence. To put it together then, when we reverence God, we are turning away from focus on self-preservation, self-glorification, self-centeredness. This is a form of shame, not in the modern pejorative sense of feeling that one is of no worth or value, but in the relative sense of humility before something or someone. When we consider the massive expanse of the cosmos, and the intricacy of the subatomic structures, and everything in between, we are shamed – i.e. humbled.

How does this connect with our modern understanding of entropy as a steady eroding of complexity toward annihilation? I think that we are so focused on the self, on the ego, on “self-esteem”, that when we consider that the world does not revolve around us, this feels like a degradation of self.The child who is accustomed to being the center of all family energy, love and attention then goes to school and realizes that he is just one of 18 who also want to be the center of attention. This is experienced as a loss of self (though a false self). It is experienced as degradation. “If I am not the center of everything, then nothing has any meaning. If the world does not revolve around me, then who and what am I? I am nothing.” This painful experience is nonetheless vitally important for progress toward maturity. It is also essential in our journey toward spiritual maturity and life in God. We can not love God with all our heart, mind, soul and strength when our own sense of self stands in that place. And yes, this experience is painful for many. It involves grief, fear, anxiety.

The good news is that on the otherside of this liminal space, this no man’s land where we are adrift, on the other side is God. Throughout our lives we experience a series of little deaths with each letting go of what we thought, how we saw the world and our place in it. This journey of life is entirely liminal, from birth to death we are in between two incomprehensible mysteries (from whence we come and whither we go), while we stand in the midst of a third that is partially visible and comprehensible. We can choose (and are taught) to be anxious about all of this uncertainty. Someone has decided that uncertainty is bad and certainty is good. Unfortunately, this is untrue. Certainty does not even exist – it is an illusion, a hologram, a mirage. The sooner we let go, or the more we are progressively able to let go of small bits of this falsehood, the more we move into a place of peace and contentment and rest, a place of faith, grace, blessedness. Paul says that we are to be “transformed by the renewing of [our] minds.” (Romans 12:2)

The Psalmist speaks of this cycle of life, all of which is in God’s hands:

24 O Lord, how manifold are your works! In wisdom you have made them all; the earth is full of your creatures. 25 Yonder is the sea, great and wide, creeping things innumerable are there, living things both small and great. 26 There go the ships, and Leviathan that you formed to sport in it. 27 These all look to you to give them their food in due season; 28 when you give to them, they gather it up; when you open your hand, they are filled with good things. 29 When you hide your face, they are dismayed; when you take away their breath, they die and return to their dust. 30 When you send forth your spirit, they are created; and you renew the face of the ground. (Ps 104)

I think it would be a mistake to conclude (though perhaps the psalmist did) that God orders and orchestrates the causes and moments of decay and entropy – as though God decided who would die in a hurricane, which child would get cancer, etc. If everything is ordered in this way, then it is not entropy at all, but simply everything going according to plan. Suffice it to say for now that I believe this belief, while comforting to some because it suggest “at least someone is in control,” is contrary to the broad witness of the bible. Rather I think God has so ordered creation, “programmed in” a design, a series of options and possibilities that then play out in their own way. Grace and Mercy are manifest in that God is present in the midst of all of this, calling us forward into life and a faith that new life comes out of decay.

I happened upon three signs this morning that actually prompted me to board this train of thought.

A cricket carcass, being consumed by ants.

 

A rat carcass, being consumed by mold spores.

What these graphic images clearly show is that death is not a finality – the very experience of entropy provides the energy for new life to be born, grow, and progress, ultimately also to decay. We see this so clearly with plant material, leaves, grass clippings, carrot tops and lettuce cores what we cast into a mulch pile and next year spread on our gardens. Yet somehow we have convinced ourselves taht as human beings we should be above and outside of this natural system.

What A sign left by the intersection of Mockingbird and Hwy 75.

I do not yet know what it means that this third image was with the other two. I actually saw it yesterday evening and almost picked it up – it felt sacred and holy somehow, as though retrieving it, honoring it, were a form of prayer for the person who had discarded it. I left it, and saw it again this morning, but folded over so I had to adjust it with my foot in order to read it. Only then did I see the rat, and the cricket, and the message began to clarify. These three are related somehow. The cricket and the rat tell us something about the sign, about the life of the person who wrote it, and about all of us. Does it say that we thrive on the decay of  others – that my existence is at the expense of another. Possibly. Does it say that human decay is not so unlike that of all creation? Perhaps. Does it say, “Well, that’s nature, so don’t bother trying to resist it or help them?” No, for all living things resist the very entropy that is a part of their nature.

Some things it does say: God is in the midst of it. Death is not the final word. New life comes after loss. We do not cease to exist, but rather are transformed into something new. And the Christian faith proclaims that this process of transformation is something that can begin in this life, and that embracing our entropy, giving thanks for it, is the path to life.

Those who want to save their life will lose it, and those who lose their life for my sake will save it. (Luke 9:24). If you are wanting to know how to live this way, I would love to journey together with you.

 

Funeral Meditation for Teresa Neifert

(NOTE: Theresa Neifert died Monday morning, 5/14, at 12:55am. I am her pastor. She was and remains a real treasure and will be sorely missed by many of us. You can see her obit and leave messages here. You can read her CaringBridge chronicling her journey with cancer. Her son Joe and husband Jeff did such a nice job speaking about her during the funeral, and her family and friends will be far better at narrating her story, so I’ll leave that to them.)

Some of us are familiar with the notion that this earth is not our home, because we are a spirit trapped in a body, and that God’s ultimate plan is to free our spirits from a bodily form. This is not what either the old or new testaments say. The biblical witness, as we have heard in Revelation and in Paul’s writing, is that God’s consummation of all things will bring us restored bodies in the midst of a new heaven and new earth – we will, in the end, be incarnational beings. Incarnation is the ultimate expression of God’s creation of humanity, not some kind of secondary temporary compromise we are stuck living for a short while. This is why there was a resurrection. Without the centrality of our incarnation, there is no need for Jesus’ bodily resurrection – he could just conquer death as a spirit – no need for the cool resurrected body that is both similar and different from the old body. This tension between our bodily and spiritual experience is none-the-less real, and Paul talks at length about it in numerous places, including:

Philippians 1:
21 For to me, living is Christ and dying is gain. 22 If I am to live in the flesh, that means fruitful labor for me; and I do not know which I prefer. 23 I am hard pressed between the two: my desire is to depart and be with Christ, for that is far better; 24 but to remain in the flesh is more necessary for you.

Paul regularly acknowledges the apparent tension we often feel between our internal and external experiences of the world, and in faith he goes further to identify a tension between desiring to be here among family and friends or in the kingdom of God in eternal bliss. This life is marked by blood, toil, sweat and tears – a phrase first uttered by the Italian revolutionary Giuseppe Garibaldi. It can be a hard life, and yet it is also filled with good food, hearty laughter, natural beauty, rapturous physical intimacy, intellectual challenge – in a word, it is beautiful.

La Vita e Bella – Life is Beautiful – Do you remember that film from 1997? Do you remember Roberto Benigni at the Oscars? He practically floated off the stage he was so filled with joy. He seemed to be filled with some kind of energy from some other place – it was infectious – the kind of thing that still makes one smile 15 years later. That is how I think many of us experience our time with Theresa – she seemed to be channeling an energy from somewhere else – it is infectious, beautiful, challenging, hopeful, inspiring. That may be part of what made the last years so difficult for us – to see someone so filled with life and love struggling to stay and continue to be present with us and for us.

People live four different kinds of lives – the interior life of the intellect, the interior life of the emotions, the exterior life of objects, and the exterior life of relationships. My sense of Theresa is that her life was very externally focused, and leaned heavily toward relationships. She worked with her hands in a very tactile and intimate way – to have her wash your hair prior to a cut was to know that someone was praying for you. She loved to be surrounded by family and friends, and loved to feed them – Sunday afternoon meals are legendary.

The fact that she lived her life so much in the body, so much in her relationship with the physical world, may also be part of what made it so difficult to let go. Theresa’s experience of her own life and faith was such that she struggled knowing how to pray once she stopped praying for healing. What does one do? There is a whole terrible and wonderful discussion to be had about coming to terms with that reality – making a conscious decision to turn from prayers for living toward prayers for dying – without feeling like one is giving up or letting others down. I’d like to share part of what I told her last week when she’d come to that place.

Learning to die – Practice in releasing

Learning to die – Looking to the crucified Christ

I’ve only known her these last ten years, and the rest only as she’s told it to me, so most of her life is out of my reach. But I can confidently say several things about her life and faith.

Theresa was generous with her life – to her family, to friends, to clients at the salon, and even to strangers near and far. Many of you were involved in her efforts for the St. Bernard Project after hurricane Katrina decimated New Orleans. From all I can tell, that was just the kind of person she was – nothing out of the ordinary, though certainly extraordinary in its effort and impact.

Theresa was vivacious – she was the kind of person other people wanted to be around and couldn’t help but like – because she wanted them around and liked them. Even in the last 48 hours of her life she was surrounded by family and friends and friends of family. She was joking and guiding and challenging and encouraging and teasing and loving. Saturday evening was a scene I’ll never forget, as she and her family drew together to boldly love one another and stare death down, fiercely proclaiming to themselves, each other, and the world that death would not separate or destroy them, that death would not get the victory.

Theresa was devoted – you knew who she loved, and she prioritized those relationships. That probably wasn’t always fun or easy, because if she loved someone she wanted the best for them and would challenge them to be their best, to hang in there, and to make difficult choices and go through tough times to overcome adversity and get to a better life.

Theresa was forgiving, she believed in second chances. How many of you in this room were given a second chance by her – or a third or fourth? Often times we take actions in our lives – we say or do something, make a decision – that we regret, but we think there’s no going back. We can’t unsay or undo those things, but the forgiveness we see in Jesus tells us – Theresa’s own faith and the way she related to us tells us – that we can be reconciled and restored, we can be forgiven, we can get another chance. With God we never run out of second chances. No matter what we’ve done, how many times, or for how long, God is always waiting right beside us to receive us back in love. It may be that the hardest part of all that is that we have trouble forgiving ourselves – I know Theresa did. She was ready to forgive others, but found it difficult to forgive herself for past mistakes and receive the grace and mercy she so freely offered to others – which God so freely offers to us.

People like to say, “Gone but not forgotten.” They put it on headstones, on car windows, on tattoos. But we shouldn’t be content just to remember, the way we remember the people from our school years. Remembering should not stay in our heads and hearts, but be incarnational – we should live it out in the world, in what we say and do, in the priorities we set and the values we live. Theresa has taught us many faith lessons, and all of them are incarnational – all of them mirror God’s love for the world which is tangible – it can be seen and heard and felt. As you remember, make a conscious decision to live your life differently because you knew her. Honor her life, her love, her legacy, by living it. Stay in relationship with her, hearing and feeling her guide you toward your better selves – toward being generous, vivacious, devoted, forgiving. By doing these things we honor her, and the God she loves.