Pediatric palliative care in Bogotá — Madonna & Angel

Today I met an angel. His name was Ignacio (name changed for privacy). He lives in a poor barrio in Bogotá with his very young mother (Madonna) and father, whose work pays for the insurance coverage that allowed our palliative care team to visit Ignacio and offer him and his family the best care possible.

(All photos used with permission.)IMG_8117Madonna sits with Ignacio, who will die within the month, on her lap. He was born with a congenital heart problem, and without the morphine he is receiving daily, would have died sooner, in respiratory distress. Many babies do not survive gestation.

Our homecare team consisted of Dr. J, Nurse H, and Dr. E, the Psychologist, who also has a diploma in palliative care.

After taking Ignacio’s vital signs and letting him play with her entrancing stethoscope, Dr. J asked Madonna about his symptoms, and learned his quality of life had improved since the last visit. She also fielded a hopeful question about a heart transplant, saying she would put Madonna in touch with the pediatric cardiologist. (She privately told later me that a heart transplant was impossible, for clinical, ethical reasons she could not go into during the visit.) Their medical duties in the house done, Dr. J and Nurse H stepped out and left Dr. E to give her counseling session, asking if I wanted to stay, which I did.  I also asked Madonna’s permission to stay.

Dr. E gently probed her state of mind, giving Madonna the space to say what she needed to say about how it feels to have a baby she knew could die at any moment, yet who seems to be doing better. The rational words failed her, and the tears came. She explained them saying she can’t stop wondering why God should punish her like this. Going over and over what she had done wrong. Dr. E heard her out and then gently told her that God was not punishing her, that he loved her, and was with her in this suffering. (Her theology was excellent!) 

She then practically paraphrased the Buddha’s story about Kisa Guatami the woman who had lost her son, saying that as mothers we never know when we will lose our children — it could be sooner, rather than later, but it may happen at some point. If it happens, tragically in our lifetimes, the death of a child is never the action of a punishing God. Gradually Dr. E calmed Madonna down, as Ignacio played on her lap with the handles of a tiny toy purse, seeming for all the world like a normal six-month old, drooping and eventually dropping off as he felt his mom relax. I told her he was an angel who was visiting her for a while, and was rewarded with a radiant smile.  Dr. E completed the image by saying he was an angel who would always be with her, whenever she thought about him, and even when she wasn’t thinking about him!

Palliative care and access to controlled medicines is excellent in Bogotá, and in some (mainly) urban areas of Colombia. For more information, see the Latin American Palliative Care Atlas. The discipline is developing slowly, and more new cohorts of medical students are receiving palliative care training as part of their education.

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Palliative Care: Slow Medicine in the Spring

While it is now common knowledge among palliative care folks that the word “palliative” derives from “palliare” or “cloak,” I had not realised that its origins are the wool pallium worn by ancient philosophers, and that the Christian tradition of the papal pallium derives from St. Martin cutting his cloak in half with his sword and giving it to the naked beggar by the roadside.stmartin3

  Monsignor Vincenzo Paglia, President of the Pontifical Academy for Life, said at a Vatican conference on palliative care last week, “when Saint Martin donated his cloak, it was cold, it was the winter, but for the poor person he gave it to, it was spring, because he was surrounded by love and tenderness.  Palliative care will help the world find a new spring.”

A commercial culture that is militantly “anti-ageing” and ageist must also be anti-dying, which in these high tech times is undignified, inconvenient and burdensome to both the patient and caregivers. Being anti-dying is not the same as being anti-death though, as the “death with dignity” folks are instructing us. Individual patients’ refusal or unwillingness to tolerate the prolonged dying characteristic of modernity directly reflects the institutional deficits of health systems’ inability to care for them in a way that aligns with their individualistic values.  Featured-Image-DIY-Anti-Aging-Cream-Serums

Healthcare systems designed to care for patients suffering from traumatic injuries, infectious diseases, and conditions requiring surgery and intensive care are now being overwhelmed by growing numbers of older persons suffering from multiple chronic conditions that persist for years, if not decades. Rather than fall through the multiplying cracks, many  of these folks would rather physicians spared them the harrowing  journey by hastening their deaths.

The medical community is well and truly split over whether the state should regulate healthcare professional participation in suicide. The organised palliative care movement largely recommends governments ensure that that palliative care is widely available before  authorising physician assisted suicide.

But it is not in palliative care’s nature to be oppositional, and providers are challenged even to think politically. Few palliative care organisations are mobilising against the self-appointed “death with dignity” movement, despite the fact that assisted dying is cheaper than palliative care and will put a damper on public investment and research funding. Palliative care can’t insist that policymakers force patients  to survive within inhospitable modern healthcare systems, least of all in secular societies that no longer ground the value of the human person in a collective concept of the sacred. The most palliative care can hope to do is witness, through a sustainable ethos and praxis, to an alternative life- and person-oriented set of values. Witnessing does not make for aggressive politicking.

The fact is that the palliative care and assisted suicide movements developed in response to the very same profit-oriented, over-medicalised disease-centred health care system. Palliative care just hasn’t developed fast enough to mitigate patients’ perfectly understandable desire to check out as soon and as painlessly as possible. The absence of a political analysis in the palliative care movement, does not obviate the fact that deriving a generalised legal norm of killing from the compelling individual cases of patients in extreme distress who want to exercise their ‘right’ to autonomy and a medically assisted death, institutionalises the original system deficits that inspired the initial decision to suicide.  Assisted suicide policies masquerade as “compassionate choices” for individuals, yet actually institutionalise rules of indifference to families and communities who struggle with inappropriate care.

Normalising physician assisted suicide  through legal regulation, de facto ratifies modern individualist ideologies, system failures and the family/community disintegration characteristic of globalised neoliberal societies. Rather than a epitomising an evolutionary success story, “Dignity in Dying” memorialises the catastrophic failure of modernity to include the marginalised and undignified  in its many success stories. Citizens who would rather die deny the irreducible relationally of the world: they refuse their fellows’ claims, opting out, rather than “staying” to ensure a common salvation [etym “salve” or healing] through more human social and health policies. GK Chesterton nails it when he writes in The Flag of the World, “The man who kills a man, kills a man. The man who kills himself, kills all men; as far as he is concerned, he wipes out the world. The suicide […]  insults every flower by refusing to live for its sake” — born of ego and pride, an over-emphasis on self rather than the rest of reality.”

Tragically, this secular culture of death, like a plague of ticks, has already burrowed too deep into decadent, superficially successful societies of the strong, those who have had their day in the sun. The individuals who request others to assist their suicide are guilty only of personalising the normative nihilism that characterises western modernity.

Palliative care, the “slow medicine” that helps patients and families faced with terminal illnesses live with acceptable quality until natural death, even in the teeth of great pain and distress, is the quintessential medicine of the weak, the medicine that will leave no one behind, to steal the tag line of the 2030 Agenda for Sustainable Development. It occupies the in-between spaces abandoned by the power of the state and medical professionals so consumed by the power to cure, they perceive their inability to ensure patient immortality as permission to kill. 

Palliative Care at the Sheep Gate

I’ve heard yesterday’s reading about Jesus healing the paralytic at the Sheep Gate with seven porticos (John 5:16) many times, and just like with all the Gospel stories different things resonate at different times depending on where I am at. What struck me about it yesterday though was John’s initial description: “In these [porticos] … lay a large number of ill, blind, lame, and crippled.  One man was there who had been ill for thirty-eight years.”    He said to Jesus, “Sire, I have no one to put me into the pool when the water is stirred up: while I am on my way, someone else gets down there before me.” The footnote says,  From time to time an angel of the Lord would come down and stir up the waters. The first one into the pool after each such disturbance would be cured of whatever disease they had.

So in 38 years no one had helped him get down to the pool! Were there no assistants around for such cases? Had anyone helped the “large number” of others?  The mind boggles at the masses of blind, deaf, and crippled folks abandoned by the porticos to stumble down into the water for a cure if they were lucky enough to make it on their own.

How similar is that to the way modern society, two millennia later, marginalises people with disabilities, those with serious illness who cannot be cured? That’s where palliative care comes in — it is for everyone, and is slowly developing protocols for persons with disabilities.  IAHPC convened several organisations at the UN in Geneva earlier this year to have a parallel event on the topic at the Social Forum, addressing palliative care for the deaf, for children with disabilities, and for older adults with dementia

While palliative care teams can’t always help people “take up their mats and walk” as Jesus did in that particular case, they can definitely (a) be present to provide clinical support, and (b) to help patients down into the healing waters when the angel stirs them up, supporting the person’s inherent dignity, providing spiritual care on request, and helping relieve pain and distressing symptoms.

The Bethsaida scene in John’s gospel is Lourdes without any patient assistants. That was the saddest thing for me in yesterday’s story, the lack of community. It was a source of joy, though, to know that today we can people that same scene with palliative care teams who can wheel patients down to the water when it is stirred up, when either we, or someone we love is faced with a life-limiting illness. Integrating palliative care into health systems will leave no one stranded by the pool when the angel comes.palliative-care-patient-nurse_1_orig

Healthy Dying

This post was inspired by a recent Tricycle article, “Death as a Spiritual Experience.” Our culture is so death phobic, yet paradoxically so entertained by violent death, that the idea of healthy dying seems counterintuitive. The much touted public health concept of “Healthy Ageing” conveniently omits the final chapter — dying, which would seem to contradict, or at least undermine, the goal of health.  How could dying possibly be healthy?

The rational solution to the problem of assuming that dying must be unhealthy, is of course government approved “physician-assisted” dying or euthanasia.  An alternative approach, which considers dying a natural process and an opportunity for healing, is of course palliative care. Offering support to patients and families through the illness, dying, and bereavement process alleviates a measure of suffering by offering to mend  breaches of connection, or heal relationships between family members. These include breaches within the self, failures to connect with, and love parts of yourself you have always despised. The transition out of the body that we call dying will be much more painful for all concerned until we accept all those parts. Doing so restores us to wholeness, or health.

Tibetan Buddhism is one of the few religious practices that directly confronts the experience of dying with a forensic, phenomenological approach that takes the transition to other vibrational realities seriously. Christianity also takes it seriously but is based on the third person perspective, or the idea that we each can mystically participate in the dying experience — the Passion — of the Christ. Doing so does not necessarily demand that we be the witness to our own dying, though.

And Vipassana teacher Larry Rosenberg points out: “most of us are imbalanced when it comes to death. We haven’t come to terms with the nature of our bodies, and we don’t see death as a natural process. So we have all kinds of funny reactions to it: excessive joking, or avoidance, or preoccupation in a morbid way. Death awareness practice can bring us into balance.”

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We can practice for dying simply by becoming aware of our breathing — of each outbreath that might be the last, and then the next and the next and the next. Making all our living in awareness of the outbreath a practice for dying enables us to  directly experience the present moment, rather than experience in a mediated way, as narrated, or not be experienced at all.

I aspire to experience all my dying: after all, it may be the only time I do it in this body, and it would be a shame to miss out!

Catholic caregiver blog. Tuesday, St. Peter Damian

Tuesday — Meeting with OAS for approval of IAHPC membership application. Trip to DC.

Jawdroppingly beautiful sunrise this morning after a very rough night with little sleep.  Impossible to photograph the layers of light behind the bare black branches, but it was riveting, and I’m glad I moved the bed to face east to catch it as I pray the office with my cup of tea. And the Communion Antiphon was Psalm 9:2-3 “I will recount all your wonders,/I will rejoice in you and be glad,/and sing psalms to your name O Most High.”  O most definitely, as I would be entirely lost without you.

The first reading was from Sirach, as it has been for the past week — warning us that “when you come to serve the Lord, /stand in justice and fear,/prepare yourself for trials./Be sincere of heart and steadfast.” That is my intent as I do this service work, both for Ruth and for the wider world.  I was tormented last night with the euthanasia debate and kept telling myself to put my worries in God’s hands, as I cannot solve it myself.

The Sirach reading continues “incline your ear and receive the world of understanding…Wait on God with patience, cling to him, forsake him not;/thus you will be wise in all your ways.” My main concern is that, if our advocacy position is to force people to defer physician assisted dying and euthanasia until palliative care is mainstreamed and all the providers trained, etc., then we are effectively forcing them to suffer without proper care.  That seems to be a deeply unethical advocacy position.  I realise it is the responsibility of the healthcare institutions and the state (not ours) to develop the policies and train the providers, but what if they don’t?

It is our responsibility to lobby and advocate as skilfully and persistently as possible for palliative care, but what if our advocacy falls on deaf ears?  Can we in all good conscience oppose calls for medically assisted dying and euthanasia, thereby forcing people to suffer, essentially in abandonment and neglect?  And as Sophia pointed out in our conversation yesterday, the Belgian position has palliative care covered, and still includes euthanasia. Perhaps we need to join forces with the euthanasia lobby but make our support conditional on the fact that they also lobby for PC?  Interesting that Age Platform Europe does not have a position on euthanasia since its members have multiple positions.

At breakfast Ruth was telling some story and said “I can’t believe I was once able-bodied” and then started to cry. I said, well, now you are able-souled. We got over that moment, but it will be good if we can talk more about it bit by bit.  Euthanasia is such a fruit of modernity.  Watching “Call the Midwife” and Sister Monica Jones used the phrase “ostentatious silence.”  We both loved it.  It is perfectly rational that moderns want euthanasia as a right, in a world without God.  Euthanasia and physician assisted dying are the fruits of modernity.  I don’t want to be against anything: I just want to be for it: for palliative care, for connection, for solidarity.

Today we celebrate the feast day of Peter Damien, who I did not know about until I looked him up — 11th Century Benedictine, who wrote a piece on “The perfection of Monks” calling them to be “smeared with pitch” both inside and out, like the Ark. The pitch is the inner lining of love, and the outer lining — how we act to others.  Inwardly united to God in love. If only one side is smeared with pitch “they cannot be saved from shipwreck in the deluge”, since they don’t have the double lining for protection.It’s a call for unity in love, basically.  It seems he had a very adventurous and political life, riddled with disunity and faction. Poor man.

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