Contending with ’spirituality’ in end of life care

Over the past several days, Denise and I have received some interesting comments (via email) regarding our spirituality presentation. In hopes to explain more clearly why we believe the distinction between spirituality and religion is important, and in desiring to share a bit about the role of witness and evangelism (and good theology) in hospice, I composed this. Sorry, as usual, for the length:

It’s typical to hear the average American say “I’m spiritual, not religious.” And those of us who proclaim a faith rooted in a certain historical event and figure, and in a certain peculiar people known as the Church and a certain set of beliefs known as the Nicene Creed, this distinction makes no sense to us (and rightly so). For us, as Christians, spirituality and religion cannot be divorced; in fact, they are two sides of the same coin. So, like many, I find the average Westerner’s postmodern attempt to extricate herself from the “religious establishment” (i.e., the Church) in order to maintain her own private, self-originating “beliefs” (i.e, opinions, choices, truth(s)) extremely problematic.

Not to boil this down to semantics, but I would argue that we are talking about two different things, not to mention the fact that we are operating  in two different contexts. Distinguishing between spirituality and religion in the context of hospice care (and care for other economically “useless” people), particularly non-Western hospice care, does not breed false consolation rooted in the Enlightenment project, but is a necessary (I would argue vital) distinction that must be made in order for caregivers to work effectively with patients of different faith traditions. The distinction is a practical, rather than theoretical, one.

Part of the necessity of distinguishing between spirituality and religion in this instance/context/culture is three-fold. First, though the majority of Hospice Africa staff are Christians (like most hospices in America I believe), not all of them are. We have several Muslim staff members who do not believe that “God saves people in Christ,” however True that may be. Secondly, though the majority of patients Hospice Africa serves are Christians, some are also Muslim, or pertain to some traditional religion. Therefore, we have on our hands a Christian-friendly but religiously pluralistic organization that aims to provide holistic care to those who are dying, including psychological, clinical, social, and spiritual support. Thirdly, the staff members of Hospice Africa, the majority of whom are clinical (nurses, doctors, etc), have no idea how to assess the needs of their patients when those needs are non-medical, especially because there is no chaplain on staff.

For instance, the staff spent an hour discussing a man who said he was “at peace with God” yet hadn’t been to church in 10 years. According to the staff, this man was  “spiritually” needy, even if he himself expressed a peace with God that was clearly independent of weekly church attendance (it should be noted this man’s illness, AIDS, rendered him bed-ridden and unable to leave his home for any reason, including Sunday worship). The staff was unable to listen to the patient’s testimony regarding his spirituality and instead focused purely on those outward “religious” signs – church attendance, participation in sacraments, etc – as a measure of his spiritual state.  We felt this was both judgmental and inaccurate, so we decided a presentation on the distinction between spirituality and religion was important.

According to Duke Divinity’s Institute for Care at the End of Life, religion in its broadest sense can be defined as “a system of beliefs and practices relating to a higher power and shared by a group of people.” Religion also “provides a community for groups of people to join together and give expression to their common beliefs, values, and spirituality.” Spirituality, on the other hand, is defined as “the inner search for meaning, purpose, and understanding of universal questions of human existence.” These universal questions (asked of all humans regardless of religious affiliation) may include “Why am I here?”, “What  is the purpose of my life?”, “Who am I?” In this sense, religion includes particular beliefs and practices held in common while spirituality represents the universal “need” found in all human beings, as universal as the need for food, shelter, and oxygen. Spiritual needs make include, according to ICEOL, “the need for belonging and relationship, the need to explore the meaning of one’s life, the need to explore meaning of suffering, and the need for reconciliation.” That need may be met through religious practice and expression, or it may not. Spirituality is deeply personal in that sense.

With regards to theology: I, too, believe that the only true hope is grounded in truth, in the forgiveness of sins and the resurrection of the dead. But I also think that any good, robust theology must stand the test of the deathbed, which is why I think hospice care is uniquely prophetic and wonderfully edifying for the Church, and for the average theologian. Imagine you have grown up Muslim all of your life, prayed 5 times a day, went to the Mosque, had a good relationship with your imam, etc. Now, imagine you are in the last stages of pancreatic cancer. You have days to live and hospice workers have come to make your final moments more comfortable, according to your wishes. After a  long struggle with coming to peace with your death, you, with the help of your religious community, feel that this is God’s will and you take comfort in that. Now, imagine as you lay in bed, preparing to leave this world, a hospice worker comes in and instead of respecting your beliefs, your religious tenants, your heritage and identity, she begins to unravel your faith in Allah, telling you that there is no way to heaven but Jesus Christ. Honestly,  I can’t imagine the sort of pain and upheaval this would cause at the end of this individual’s life, particularly an individual who has finally, with the help of his religion, come to grips with his own mortality.

Now, imagine you are a Christian. And imagine if on your death bed, a Muslim hospice worker began sharing with you “the hope that is only found in Allah.” I can’t imagine something more intrusive or unwelcomed. According to ICEOL, such an intrusion can result in “spiritual pain,”  which is in direct opposition to the “Do no harm” model of hospice, and the medical community at large. How, then, do Christian chaplains (or Muslim chaplains, for that matter) who are deeply convicted of the Truth of their faith address the spiritual needs of those patients who are religiously Other? This is the tension of living in a pluralistic society with which chaplains must contend. In fact, it is a tension every Christian who believes in the uniqueness of the Christian story must come to terms with, as well.

There are some Christians (and other religious groups) that operate under the assumption that they are the sole instruments of salvation for those with whom they come in contact, and that if they don’t “save” them before they die (i.e, “urge them to accept the truth”), they will be condemned to hell for all eternity. Frankly, I find this anthropocentric soteriology unsettling, not to mention theological untenable. The goal of hospice care is not to win the souls of the dying before it’s too late. As a Christian caring for the dying, I am called to recognize them as the mysteriously “blessed” of the beatitudes – the weak, the mourning, the sad and broken and poor. And with those people, I both encounter and proclaim Christ.

I think that most hospice workers would say that impinging their beliefs, however True, upon a dying patient is wrong.  Urging a patient to “accept the truth” as they lay dying rather than resting in the knowledge that our (and their) salvation lies in the hands of a crucified and risen Lord (who, through his own death, raised us all to life) borders  dangerously on the edge of self righteousness. I do believe Christ can be “betrayed” by completely eliminating him from the death bed conversation. But I also believe that our attempt at orchestrating death bed conversions, particularly for patients who have already made peace with God and are ready to die with dignity, is also betrayal of Christ. To assume that the main access to faith is purely cognitive and didactic is in and of itself a diminution of the Christian message.

My job is not to secure their place in heaven, because in my theological opinion, Christ did that on the cross two thousand years ago (see Karl Barth). Instead, my job is to care for them, to listen attentively and without judgment, to answer honestly when asked, to speak truth when truth is ready to be heard, to change bandages on incurable wounds and hold trembling hands,  to experience their suffering as my own, but ultimately, to give as Christ has given to me. And I firmly believe that those who are “on their way out” so to speak are in a far better place to ponder (and perhaps understand) the Truth of God’s saving work, not to mention the power of the Resurrection, than a healthy, able-bodied, able-minded Duke Divinity MDiv student like myself.  So, I’m not sure if we need to equip ourselves with a sophisticated account of how God’s saves people in Christ in order to minister to the dying. What hospice workers, and chaplains, need most are those habits of being and doing that witness to the Kingdom of God to those already broken by the fallen world. I think Catholic lay-woman, doctor and hospice worker, Shelia Cassidy, says it best:

 “I believe that those who work with the handicapped, the dispossessed and the dying have very expensive ringside seats at the fight: we have a close up view of players who are stripped of sophistication and pretence, of the comforting outer garments with which men cover their nakedness, their vulnerability and their shame. Surely then, we have a duty to report back the truth of what we see: that the facts are friendly; that the blind see, the lame walk, the lepers are cleansed, and the good news is proclaimed to the poor – that the kingdom of God is among us, and that herein lies our hope.” (Sharing the Darkness: Spirituality of Caring, 3)

Witnessing the Christian message involves becoming the Christian message, Christ’s hands and feet. We as the Church are called to embody Christ through our actions as a sign to the broken, fallen world. In the words of St Francis of Assisi, we are called to go forth and proclaim the good news of the gospel wherever we go, and “when necessary, use words.” As Michael Cartwright states, “what Christians throughout the world can do – with confidence and humility – is to bear witness to the good news by fostering the kinds of habits and practices that enable would-be disciples of Jesus Christ to remember the saints and the martyrs.” If we truly believe that God has created all, loves all, and seeks relationship with all, we can safely speak of this as the universal spiritual need of human beings to be in relationship with God. And if we want to truly and faithfully witness to that God, we can do so by our ethos, as signs pointing to God through our care, particularly our care of those deemed useless by society (the dying).

St Francis’ prayer is, I believe, a perfect prayer for those who work in Hospice: “Grant that I may so much seek to be consoled as to console; to be understood as to understand; to be loved as to love; for it is in giving that we receive, it is in pardoning that we are pardoned, and it is in dying that we are born to eternal life.” Could it be that the simple, embodied acts of patient consolation, humble understanding, and compassionate love proclaim the True Hope in found in Christ to those dying? I think St Francis would say so. And could it be that, in turn, caring for the poor and weak and broken-bodied assists us in working out our own salvation, coming face to face with the True Hope found in Christ? I think St Francis would say so, as well.