Disclaimer: palliative care as a multidisciplinary clinical “approach” to serious illness is not identified with any particular religious tradition. Palliative care does, however, have an essential spiritual component that distinguishes it from other medical specialties. What follows is a meditation on the spiritual identity of palliative care from snippets of both the Christian and Buddhist traditions.
“Where the corpse is, there the vultures will gather.” Luke 17:37
The roots of death averse culture lie in preoccupation with the self and the life of the body. Modern physicians and patients seek to preserve life at any cost, preferring to ignore the gospel teaching that “whoever seeks to preserve his life will lose it.,” which precedes the pronouncement about vultures. The medical profession’s business, its very identity, depends on its ability to preserve life above all else, rather than to “lose” it. Doctors and patients alike consider it a failure to lose what they conceive of as a battle with cancer.
But wait, doesn’t Jesus himself bring people back to life and restore seriously ill people to health? He is even known as the “divine physician.” So what’s up with not “preserving” life and using corpses and vultures as teaching props?
Jesus heals and brings people back to life out of compassion for their suffering and to manifest God’s power, not because he believes the life of the body to be of supreme importance. His teaching that we will “lose our lives” when we try to preserve them points to how we cause suffering by fixating on the life of the body and fearing death (the corpse), rather than nourishing the life of the spirit. Jesus is pointing his followers to the the spiritual poverty of mistaken identity, warning those who identify primarily with the body, that they will lose their lives. They won’t just lose their bodies by dying physically, they will die inside and suffer spiritual poverty while still embodied.
The Tibetan Buddhist practice of meditating on corpses and vultures, in graveyards, and at “sky burials,” also resonates with this teaching. The explicit aim of Chod practice is to dis-identify with the corporeal body while appreciating the precious opportunity it provides for liberation. The practitioner observes disintegrating corpses, reflecting that his own body will be a corpse one day, ultimately seeing clearly how the body serves simultaneously as a vehicle for liberation and as food for the vultures. Human life, which by definition is mortal, and death’s very inescapability, make committed spiritual practice an urgent priority. Reminding themselves of this, many Buddhists, echoing the 13th century Zen master Dogen Zenji chant
Life and death are of supreme importance. Time passes swiftly and opportunity is lost. Let us awaken, awaken…. Do not squander your life.
Likewise, Jesus points out that excessive preoccupation with self, with the life of the body, makes us miss the connection with the larger life spirit that enfolds it and originally brought it forth. He is saying that this is a great loss, worse than the loss of physical dying.
One reason modern westernised cultures fear the corpse so much is because death and dying are no longer part of ordinary life in countries not experiencing war (or ebola). Before the advent of the medical industrial establishment, which sees death as a failure of its mission, people died at home. Women washed bodies and prepared them for the cemetery at home. Now that dying is hidden inside hospitals and nursing homes, and corpses are whisked away as soon as possible, modern consumers of medical care can put off thinking about what inevitably awaits them. And the medical profession is only too happy to collude in that procrastination, having taken it upon itself to “preserve” life for as long as possible at any cost.
The desire to medicalise and preserve life beyond its natural span has produced a death-denying culture that causes great physical, spiritual, and financial suffering to patients and families. The rapid ageing of our societies, though, added to the movement to bring dying back out of the hospital and back to the home will help to remedy our illiteracy about death. This move to bring dying home must also include clinical, spiritual, and emotional support for caregivers though, since demographic and employment structures have changed since the days when people routinely died at home.
One such support, of course, is palliative care. Palliative care does not seek to “preserve” life at any cost, but offers patients and families sophisticated clinical, spiritual, and psycho-social skills to alleviate the symptoms and sufferings of serious illness. It serves both patients who are not terminal, as well as those who are actively dying. Palliative care thrives on an ethic of accompaniment, which places the dignity and wellbeing of the individual patient and family at the center of the team’s concern. Rather than labouring to preserve the life of the body, spiritual counsellors on palliative care teams support patients and families connection with the life of the spirit, thereby “saving” that life as the other slips away.
Future blogs will focus on how palliative care alleviates spiritual suffering of patients and caregivers.
Our simultaneously freedom- and control-obsessed society stigmatises prisoners, former prisoners, children of prisoners, siblings of prisoners, and parents of prisoners, much as it stigmatises people who use drugs and sex workers, particularly if they are poor and non-white. My oldest son is biracial:Caucasian/Salvadoran, tattooed from head to toe and, growing up in Northern New Mexico, always identified as Chicano. As a youngster he was in and out of juvie, has been homeless in New York City and Albuquerque, and no matter how many treatment programs, counselors, and twelve step groups he has attended, has been unable to stay sober for more than 18 months at a time.
When he relapses, Pablo blacks out and commits non-violent misdemeanours that a California judge finally rolled into a felony charge, a “strike”, sending him away for a three year bid at a maximum security prison. He lives in a “dorm” rather than a cell, with hundreds of other men, including many lifers, one of whom is now his “accountability buddy” in a prison twelve-step program. When I visited him the other day he was sober, clean, and very clear about his spiritual freedom. We had a wonderful five-hour visit.
As the mother of an incarcerated son, I have the choice to either accept the stigma, the shame society projects on me by never to talking about this “status”, or can reject it by speaking the truth aloud when appropriate. I don’t beat people over the head with it, or bring it up out of context. Neither do I avoid it if the subject of where my children live or what they do, comes up in conversation.
When I do mention that my son is in prison, most people respond with shock and embarrassment, much as they do to announcements about terminal disease or death. “Oh I am so sorry” said the African American Enterprise shuttle bus driver as he took me, his only passenger, to my rental car at LAX at 5am. He was making polite conversation about my destination once I picked up the car, and when I said I was going to Tehachapi, to visit my son who is in prison there, he predictably expressed dismay. Yet we ended up having a wonderful conversation, as he recalled how energised he and his uncle would be when he visited the nursing home where his relative was confined following a series of strokes.
Although the US has more than 6 million people under “correctional supervision”, a number comparable to imprisonment rates in Stalin’s gulags, people who don’t know, or don’t have an incarcerated loved one, are still shocked that an ordinary looking middle class, middle-aged white mom such as myself should have a son in prison. The multi-billion dollar “corrections industry” functions in a parallel universe from the comfortable lives of most Americans. It is, however, the universe of many lower income African-Americans, Native Americans, or Hispanics from certain neighbourhoods and states, and often I am the only white person in the visiting line, surrounded by women and children of African and Hispanic descent. Prison temporarily effaces the privileges of whiteness.
“Coming out” as the mother of an incarcerated person means telling people how much I love visiting jails and prisons to see my beloved oldest son. Which does not, of course, mean that I think he, or many of the other men we interact with during visits, belong inside. I love it because I get to feel and share in the joy and anticipation among the women and children in the waiting rooms, in the lines we have to form to get into jail, and in the shuttle bus to the yards. There is a palpable sense of community, family, sharing, friendliness, and the relief being about to see our loved ones after a long separation. Shame and stigma have no place in our interactions. We are all there because we love our prisoners. We are not strangers to one another.
Yesterday, when I was meditating on it, I realised that the joy and anticipation I experience in visiting a jail or prison to see Pablo, resembles the joy and anticipation of Advent. We are all waiting to see, hold, and speak with our loved ones, something that happens only rarely for most of us. And we anticipate their joy at seeing us, at feeling the first hug, drinking in each others’ presence for a limited time, and telling all the news and truths we can squeeze into those brief hours before the call “Visit’s over”. There is a quality of appreciation in the encounters that is lacking in most of our encounters in the outside world, a quality that reminds me of the how I used to feel as a hospice volunteer, being with people during the final stages of their lives. Our precious time together is distilled into the very few things that really matter. The value of our moments together is magnified in a way that our non-prison encounters, sadly, are not.
The central dynamic of both terminal illness and incarceration is, of course, loss of control, or rather loss of the illusion of control, and yet it is almost a cliche to say that many people who are dying, and some, like Pablo, who are locked up, sense an inner freedom that was previously inaccessible to them. The freedom of not being in control is a source of joy. Another paradox of the power of love, which relegates the power of the state to the shadows.
Estela de Carlotto, President of Abuelas de la Plaza de Mayo at the Human Rights Council, September 2014 Pictured with the Argentine Ambassador, after a side event about her 37 years as a human rights defender
My three weeks at the Human Rights Council in Geneva…staying centred through multiple side events about atrocities in Gaza, Kashmir,and in many other places.
I attend the Human Rights Council in Geneva because I have a job to do there. I advocate for palliative care as a human right, which means I introduce myself to people who might be able to influence national and world opinion regarding the need to improve palliative care and access to pain medicines. I attend meetings of the Council and side events that might be related to the issue and where I might be able to contribute and influence the agenda. Some side events I go to are not work-related though. I go because I want to learn more about the human rights violations that are taking place in different parts of the world where life is infinitely less comfortable than the one I enjoy, and that is the “base camp” of my personal and professional human rights advocacy.
The litanies of atrocities recited at the Human Rights Council daily are simultaneously excruciating and anaesthetising. They are numbing, if as a listener and participant, you simply can’t take the amount of pain that the speakers in Room XX itself, where the HRC meets, or at the side events, are compelled to dish up during their three minute interventions. I watched myself numbing out one day when NGO speaker after speaker recited the litany of child rapes, sexual slavery, and desperation involved in trafficking and slavery in a significant number of countries. I realised I hadn’t heard what the previous two speakers during the session had said because I was paying attention to something else, probably something on my laptop or smartphone.
That bothered me. I was critical of the delegates who were sitting there checking their cell phones and Facebook pages or openly talking to one another when one speaker or another, their colleagues in fact, would take the floor. And now I couldn’t listen either! So I started going to side events, during sessions I did not need to attend in the chamber, so I could pay more focused attention to the pain and horror that representatives of those who were being attacked on the ground, were charged with presenting to the world. I learned more about Gaza, and the atrocities that took place in recent months and are ongoing, where the Israeli imposed pain and frustration and sheer brutalisation of a population is only escalating. One presenter showed the newsreel film of the Israeli and Lebanese massacres of Palestinian refugees at Sabra and Shatila in 1982, a sight I would never forget after seeing it at the time on the American television news, sandwiched between advertisements for denture cream and weight loss products.
The Sabra and Shatila film’s narrator, who was present at the site after the massacre, talked about the piles of bodies they encountered as they entered the camp, and how when he walked through it, shouting “we are with the International Committee of the Red Cross,” could you please let us know if you are still alive” — or something like that, no one came forward because the Lebanese militias had also been going through the camp saying that, and then shooting anyone who came forward. So the massacre survivors all stayed hidden until one thirteen year old child was the first to stand up from a pile of bodies. “It was like the Resurrection” the Palestinian narrator said, “it was like Christ rising from the dead.” I will never forget it as long as I live.” And after that brave, traumatised child stood up, other people started coming forward, and they were able to take care of the survivors as best they could, and bury the two thousand dead, one by one, respectfully, their feet turned in the correct direction toward Mecca, the bodies of men and women laid out correctly.
I also went to several side events on Kashmir and even spoke on one panel about the UN Security Council resolutions on Jammu Kashmir, which date back to 1948, the human rights atrocities India is perpetrating there with impunity, and the relevant international law that, at least on paper, supports a negotiated political settlement and the possibility of an improved human rights situation. The model is Argentina, at least partially, and Argentina had a lot of airtime and centre stage time during the first week of the HRC, as Estela Carlotto, the president of the grandmothers (Abuelas) of the Plaza de Mayo, was able to reunite with her grandson, whose mother (Estella’s daughter) the generals had disappeared and killed during the “dirty war”. The “dictadura” or the Argentine military, killed thousands of mostly young people and students, tortured tens of thousands, and outright stole and “placed” more than five hundred babies born in captivity, in families of high ranking members of the elite that could not have children of their own.
But history sometimes comes full circle, as we saw and heard at the side events sponsored by the Argentine mission, which told the story of the country’s emergence from dictatorship to governance under the rule of law, a truth and reconciliation commission, and justice for the perpetrators of atrocities. One miracle, carefully nurtured by the mothers and grandmothers of the disappeared as well as multiple anonymous human rights defenders, is the genetic databank, and its potential to match the DNA of the grandparents or near relatives with the grown children (the stolen babies of the parents who were disappeared and killed) and who are now looking for, and finding, their “real” families.
In two of the events I went to, Ms. Estela Carlotto thanked the International Committee of the Red Cross, the Human Rights Council and other international NGOs for the support they gave he grandmothers and mothers of the disappeared during their struggle under the dictatorship. The tenacity of the mothers, the commitment of the transnational human rights community, and the vision of a different global community allows hope, no matter how fragile, to take root and possibly flourish in a community that would otherwise despair. If it can be done in Argentina, it can be done elsewhere. It takes passion, tenacity, and as Estela says — above all “love.” Amor.
In the context of the litany of despair recited by human rights defenders from Gaza, Chechnya, Sri Lanka, the Turkmen area of Iraq, the Punjab, Kashmir, and Oman, where poets are imprisoned for decades for standing up for free speech, such victories of vision are lamps on the lamp stand that cannot and must not be hidden. The Human Rights Council has within itself the resources to challenge atrocities and set the agenda for a world whose cornerstone is human dignity, as articulated in the Universal Declaration of Human Rights, rather than a world where some powerful groups treat others as human waste, or “homo sacer” — the scapegoat that can be sacrificed so that we, the people, need not evolve and learn to meet the collective challenges of being human more courageously.
As preparations begin for the United Nations General Assembly Special Session on Drugs, I address fear-driven opioid policy and calls for integrated education on pain and dependence, and improved clinical practice for both.
Fear of diversion, abuse, and addiction actively conditions the scarcity of medical opioids in most countries.
Palliative care advocates often choose to distance themselves from ‘drug policy reform’ debates about national and global efforts to control and reduce the harm of illicit drugs. Indeed, many see people who use illicit drugs as ‘the problem’ that hinders legitimate access to opioids for pain relief.
Yet the challenge of improving access to opioids for palliative care is joined at the hip with drug policy reform and law enforcement. Fear of diversion, abuse and addiction actively conditions the scarcity of medical opioids in most countries. The same fear or – more accurately – phobia, has a chilling effect on medical education and results in stigmatisation and negative public health outcomes for both palliative care patients and people who use drugs who need to access treatment.
According to the International Narcotics Control Board (INCB) survey of countries where access to controlled medicines such as morphine and methadone is low-to-inadequate, fear of addiction is the main barrier to access. The scream Munch depicts in his famous painting can be seen to aggregate the screams of the millions of people whose doctors cannot or will not prescribe morphine or other painkillers because decades of fear have configured systems of law, education, medicine and culture, wherein fear of diversion, ‘abuse’ and addiction trump the ethical duty to relieve avoidable pain and suffering.
The fear-driven paradigm deprives more than 80% of the world’s population (5.6 billion out of 7 billion) of access to opioid medicines for pain, palliative care and dependency treatment. These people literally pay the price of this socially and politically generated fear with their lives, the quality of their lives, and their families’ and communities’ copathetic pain and suffering.
This fear-based approach to pain relieving medicines derived from ‘narcotic drugs’ – read opium poppies that have been used as medicine for millennia – is based on the 19th and early 20th century experience of European and US missionaries in China and the Far East who witnessed the deliberately induced ‘epidemic’ of dependence created or supported by their own governments (Great Britain and the US for the most part). Opinion leaders feared that the corrupting effect of ‘oriental’ opium ‘addiction’ would spread to the respectable middle classes in their home countries. There is a prolific literature on this, and many primary sources are archived at the World Council of Churches Ecumenical Centre in Geneva, where I have spent many happy hours of research.
But that was then, when there was no evidence-based addiction medicine as we know it today. Concepts such as ‘prevention’, ‘treatment’, ‘tolerance’, or the titration that is intrinsic to palliative care were unknown. Any and all use was stigmatised as ‘addiction’. That day and age was pre-HIV/AIDS, pre-injection drug use, and pre-palliative medicine. The only remedy at hand, to the social reformers who wanted to abolish the scourge, or ‘evil’ of addiction as they called it – since it hampered their missionary activities in the far reaches of the Empire – was what is now known as ‘supply control’. Supply control means literally eliminating all sources of narcotic drugs on the planet, except for the amount needed (an imaginary number in the early 20th century) “for medical and scientific purposes.” Resulting policies generated the model of forced crop eradication, punishment, and military policing that is popularly known as ‘the war on drugs’, creating large black markets, violent trafficking cartels, overflowing prisons and so on.
Three decades after the international treaty regulating narcotics was drawn up at the United Nations, we have relatively accurate data: The World Drug Report, published every year by the United Nations Office on Drugs and Crime (UNODC) estimates the number of people who have used an illicit drug in the past year is 243 million. The number of ‘problem drug users’, people who need opioid dependence treatment, is estimated at (an annually stable) 27 million, out of a world population of more than 7 billion. And globally, the number of people needing treatment for dependence disorder relative to availability mirrors the unmet need for palliative care: at least one in ten.
There is no need to fear the prospect of generalised dependence disorder as did previous generations. There is wide-ranging agreement about what causes it, how to identify it, and how to prevent it. However, the policies are severely lacking. We now know how to alleviate severe pain and symptoms resulting from cancer, terminal AIDS and other disorders. Again, appropriate policy lags behind palliative medicine’s rapid development as a recognised specialty. Morphine is cheap, easy to produce, and scarce. Yet countries like Uganda and Indian states like Kerala manage to subsidise it and teach their pharmacists to reconstitute morphine powder for the needs of their citizens.
Institutionalizing palliative care knowledge and practices more widely, alongside evidence-based prevention and dependency treatment, will dissipate and displace the fear generated by the old paradigm of the ‘evils of addiction’. Expanding clinical education about pain and dependence, and integrating both practices into primary healthcare are pragmatic first steps.
The new paradigm of global palliative care is responding to fear by demanding appropriate national and international institutions. You don’t have to be a Christian to subscribe to the notion that “God hath not given us the spirit of fear; but of power, and of love, and of a sound mind” (2 Timothy 1:7). You can be a humanist, an atheist, even an evolutionist to help midwife this new paradigm into being so long as you can synthesize love with a sound mind and good clinical skills.