Hospice & Anxious Spirituality

what happens when faith becomes a form of pretense.

I want to say that healthy spirituality—Christian or otherwise—invites us to show up to our lives with the kind of attunement and emotion that appropriately corresponds to the circumstance we find ourselves in.

When I meet family members whose loved one has just been admitted to hospice, what I hope to encounter is “appropriate grieving”—that the spouse, child, etc. of the patient is not in denial about their loved one’s condition, or is at least in the process of accepting the reality that a loved one is dying. Naturally, tears would be expected, or a similar expression of sadness that the end is near. It doesn’t mean the grief cannot also be expressed peacefully, but however it presents, I want to see and hear family members speaking with sober-mindedness because they are present to reality. When we are present to reality we can be present to love, including the Sacred in our midst.

The converse is also true, sadly.

I think about a particular family I recently worked with. They are conservative evangelical. The wife, also a mother of four, was just admitted to hospice and the assessment from our medical team at the time of admission was she would only live a matter of days, perhaps even hours depending how things progressed. This was a very sad situation in part because she was only in her sixties.

The family was very involved in a non-denominational church. When a nurse and I scheduled to come to their house for the initial visit, the husband asked if we could come after friends from their church were stopping by to pray with them. I was relieved, at first, to hear they had robust church community supporting them during this difficult time.

When we arrived and began our intake and assessment, it was clear the husband was not doing well. He was restless and exhausted at the same time. Of course! The process of preparing for a loved one’s passing is both painful and stressful. The primary caregiver(s) are often burdened not just with the loss itself, but with all the logistics and planning that occur at the same time: funeral home, arranging family travel, signing advance directives, etc.

But as we gently began educating the husband about the dying process, he made clear that they were not “giving up” in his words. He, the family, and the church were still proceeding with a belief that the wife was going to rally. The husband believed if his wife began a certain medication regimen (not covered by hospice) and if everyone continued to pray, she could be healed entirely or at least improve enough to give her and the family many months longer together.

The patient passed away about 24 hours later.

In the case of the husband and church’s rubric of faith, there was a direct line between their beliefs and his (in)ability to be solely attuned to his wife in her final hours. Ironically, his beliefs kept him from being fully present with his wife or being present with himself in the fast-unfolding reality of loss.

It is normal and quite common for people to dissociate when they are under significant distress, but it’s alarming when our faith systems deepen our dissociation.

The beliefs were already baked in. So when the time came and a wife and mother was actively dying, rather than accepting reality, a spouse believed it was their duty to “fight reality with faith” and intercede instead. All of this led to a sadly incongruent response to grief. Rather than sacred presence, anxiety filled the home.

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If you are a churchgoer, it is wise to ask how your church does or does not companion pain, sorrow, weakness, and mortality.

Some churches are openly averse to pain because they speak of faith primarily with the language of triumph or conquest.

Some churches sequester the human experience of sorrow because it’s a vibe killer and they’d rather recite the ‘good news’ as though it cancels out our sadness.

Some churches nominally address our mortality but neglect to guide us through the many faces of grief that greet us over the course of our lives.

If you’ve had a helpful church experience, I hope it means a faith community shared the language of loss as a means of communion with one another. I hope it means a congregation has learned to deal in the world of reality together, the world where death is accepted and integrated, rather than embracing practices that sabotage our humanity.

If you are a churchgoer, it’s good to ask how your church is acquainting you with death and dying. Not a morbid fascination. Not an intellectual discussion of doctrines. Instead, an embodied approach to human dignity that enters into a very sacred and vulnerable part of our shared experience.

There’s a reason why assisted living facilities, memory care centers, and the like are easily forgotten communities. For one, they mirror what much of our culture does not want to face. But also, implicitly or explicitly, these communities are not valued—because they include people who can no longer ‘contribute’ much to society.

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I have so much compassion for the messiness of grief. A lot of old wounds, unmet needs, or unvoiced expectations can surface in families when a loved one is dying. Of course, many family systems are dysfunctional which can make the experience of loss much more intense.

For families who are very religious, I always pay attention to how the belief system nurtures or diminishes the relational environment at end of life.

I was recently visiting with another couple whose husband is declining with dementia. They come from a charismatic Christian background. Every time I speak with the wife, she reflexively uses spiritual rhetoric as though she wants to impress me or ‘perform’ her religious devotion. It is clear that the religiosity just makes her more exhausted.

At one point, I tried to gently redirect her attention to herself. “So you have been doing this for a couple years now,” I said, “being a full time caregiver for your husband. You’ve been with him practically every moment as you’ve watched him decline, now to a point where he can no longer carry a conversation. I am sure this can be incredibly lonely. You must feel powerless a lot, I imagine, losing someone in real time who is so special to you.”

She immediately teared up, then paused for a few moments to gather herself. “Yes,” she affirmed, “thank you for seeing me.”

He said, ‘Where have you laid him?’ They said to him, ‘Lord, come and see.’ Jesus began to weep. So the Jews said, ‘See how he loved him!’

John 11: 34-36 (NRSV)

Sometimes people who are the most religiously devout are the least prepared to enter seasons of grief.

Sometimes a person’s assuring beliefs about eternal life prevent them from responding appropriately to a current reality.

Healthy spirituality anchors us to the present. It does not resist the experiences of pain, sorrow, and loss.

It is disheartening that many people who hold deeply Christian beliefs, for example, allow those beliefs to become such an unhelpful source of distraction in the most tender moments. You would hope their spirituality would be well-metabolized so that persons can approach seminal moments like a loved one dying with deep grounded-ness. Instead, religion can serve as a numbing agent or an irritant in those final days or months.

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I don’t view an aversion to grief as a challenge primarily for individuals to alter or better understand their spiritual beliefs. Oftentimes people remember and recite their faith practices exactly how those practices were modeled to them. As in the aforementioned story of the church coming over to pray with the family, unhealthy or anxious spirituality is almost always a system promoted and embraced collectively, from the top down.

Honoring mortality and loss are communal experiences that are meant to be integrated with our lives from an early age. None of us gets to bypass these realities, and yet we do our best to avert our gaze until we have no choice but to face them, which can make the experiences more traumatic.

The prerogative of the culture, including the emphasis of many churches, is to prolong our youth and procrastinate our engagement with death for as long as possible. Or, to use religion as a means of “transcending” pain, which is of course a fallacy. This is another way of saying that unhealthy spirituality produces people who are emotionally stunted and incapable of registering their own suffering.

Occasionally, we meet families in hospice who are beautifully prepared. Some of them are religious, others with no faith at all. They have done the spiritual work of integrating mortality and honoring death. They have tilled the soil of their hearts to meet loss with reverence and expectancy. They have prepared themselves to cherish the moments and seasons with clear-eyed perspective. End of life, then, is not a daunting or intolerable reality. It is the next rhythm of their lives to be received with undivided attention.

It is counterintuitive for many to consider that simply acknowledging our own experience of sorrow is often the most spiritual practice we can offer. Prayers or rituals may be welcomed, but the fundamental invitation is always toward receptivity to what is.

Receiving what is might take courage, but it is always better than avoiding reality in the name of faith.