In the quiet, hallowed spaces where life transitions into death, there exists a profound emotional terrain that is often difficult to navigate. When we sit at the bedside of the dying, we expect sadness. We anticipate a heaviness in the air, a natural mourning for the world that is slipping away.

It is widely assumed that to be dying is to be depressed, as if despair were an inherent symptom of mortality. However, this assumption is one of the great tragedies of end-of-life care. While sadness is a natural companion to farewells, pathological depression is a thief that robs the dying of their final opportunities for connection, meaning, and peace.

As death doulas, we occupy a unique and delicate position. We are not medical clinicians; we do not diagnose, prescribe, or treat pathology. Yet, our role is essential precisely because we are the keepers of the narrative.

Unlike the physician who may see the patient for fifteen minutes during rounds, or the nurse who must focus on the immediate mechanics of symptom management, the death doula is often present for the long, unedited hours of the day. We witness the subtle shifts in temperament, the texture of the silence, and the specific quality of the suffering.

It is through this sustained presence that we become critical observers, capable of distinguishing between the necessary work of preparatory grief and the treatable burden of clinical depression.

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Understanding Preparatory Grief

To advocate effectively, we must first understand the natural emotional labor of dying. There is a phenomenon known as “preparatory grief,” a term that describes the normal, adaptive reaction to impending loss. As the body declines, the spirit begins to untether itself from the obligations and attachments of the physical world.

This often manifests as a withdrawal. The dying person may speak less, sleep more, and show a declining interest in the news of the day or social visits.

This withdrawal can look alarming to a family member or an unseasoned observer, yet it is a vital protective mechanism. It is the psyche’s way of conserving energy for the internal work of letting go. In this state, the person may express sadness, but that sadness is usually focused on the loss of specific loves—grieving the inability to see a grandchild grow up or missing the comfort of their own home.¹

This grief comes in waves; it is fluid and responsive. Even in the midst of this sorrow, a person experiencing preparatory grief can still access moments of connection.

They can be touched by the beauty of a flower, the taste of a favorite treat, or the warmth of a hand holding theirs. Their self-esteem remains intact; they mourn their death, but they do not loathe their existence.

Identifying the Shadow of Depression

Clinical depression, however, is a static and suffocating fog. It is not part of the natural dying process, and it should not be accepted as inevitable.

The distinguishing feature of depression in the palliative context is often a pervasive sense of worthlessness or disproportionate guilt. While the grieving person feels sad about leaving, the depressed person may feel that they should leave, or that they are a burden unworthy of care.

J. William Worden, a prominent voice in grief therapy, suggests that the erosion of self-esteem is a critical marker distinguishing depression from grief.² In the context of a terminal illness, this might manifest as a patient refusing pain medication not because they wish to be lucid, but because they feel they deserve to suffer.

It may appear as anhedonia—the total inability to feel pleasure or comfort. When a dying person cannot find a single moment of respite from their mental anguish, or when their hopelessness becomes a fixed state that creates a barrier between them and their loved ones, we are likely witnessing a clinical issue that requires medical compassion.

The Doula as an Advocate

This is where the death doula’s advocacy becomes a sacred duty. Because we sit in the stillness, we hear the whispers that the medical team might miss. We hear the difference between “I am sad to leave you” and “I am useless and want this to end right now.” We observe whether the withdrawal is a peaceful turning inward or an agonizing isolation.

When we suspect that a client is suffering from untreated depression, our role is to validate that experience and bridge the gap with the clinical team. We do not offer a diagnosis; rather, we offer observations.

We might say to the attending nurse or physician, “I have noticed that [Name] is expressing feelings of profound worthlessness and has been unable to find comfort in things they previously enjoyed. I am concerned this might be more than natural sadness.”

When we center our advocacy on precise behavioral observations, we prompt the clinical team to initiate a formal assessment.

It is crucial to recognize that treating depression at the end of life is not about forcing a dying person to be “happy.” It is about removing the obstacle that prevents them from doing their final emotional work.

As Ram Dass and Mirabai Bush eloquently explore, the goal is to help the individual walk toward their transition with as much clarity and love as possible.³ Depression obscures that clarity. It creates a state of internal isolation that makes the beautiful work of “legacy”—of saying I love you, I forgive you, I thank you—nearly impossible.

Distinguishing Physical Decline from Emotional Despair

One of the most challenging aspects of advocacy is separating the physiological process of dying from emotional pathology. As the body’s systems slow down, lethargy becomes a dominant state.

A client may spend the majority of their day sleeping or resting with their eyes closed. To the untrained eye, this extreme inactivity can mimic the vegetative symptoms of severe depression.

However, the doula notices the quality of the wakefulness. When the client awakes from a physiological slumber, are they present? Do they offer a weary but genuine smile? A person undergoing natural physical decline may be exhausted, yet their spirit remains accessible during their brief windows of energy.

In contrast, a depressed client may wake with a sense of dread or agitation, retreating into sleep not because their body demands it, but because consciousness feels unbearable.

Documenting these differences assists the medical team in discerning whether the lethargy is a symptom of a metabolic or psychiatric condition.

The Mask of Unmanaged Symptoms

It is also vital to consider that what looks like depression may actually be the mask of unmanaged physical distress. Chronic, low-level pain, nausea, or severe constipation can cause a patient to withdraw socially and emotionally.

If every movement hurts or every conversation is exhausting, a person will naturally stop engaging with the world. This is not necessarily a mood disorder; it is a physiological crisis.

The death doula plays a pivotal role here by tracking the correlation between symptom relief and emotional engagement. We might observe that after a medication adjustment, the client’s “depression” seems to lift, revealing a person who is simply tired but willing to connect.

We advocate for the client’s emotional health by first ensuring their physical comfort, which clears the way to assess their true emotional state.

Spiritual Distress Versus Clinical Pathology

Beyond the physical, we must also be attuned to spiritual distress. This is a profound existential suffering—a crisis of meaning—that can closely resemble depression.

A client asking, “What was the point of it all?” or feeling a deep sense of abandonment by their faith is grappling with the magnitude of their mortality. This is a spiritual labor, often referred to as “total pain,” and while it is agonizing, it is not always a clinical illness treatable by antidepressants.

In these moments, the death doula’s presence is the intervention. We sit with the unanswerable questions without trying to fix them. If we sense that the distress is rooting into a pathological hopelessness that prevents any resolution, we advocate for spiritual care chaplains or therapists.

Differentiating between a soul searching for peace and a mind chemically unable to find it is a nuance that requires deep, patient listening.

The Role of Family Dynamics

Frequently, the call to “fix” a client’s mood comes not from the client, but from their family. Loved ones, terrified by the impending loss, may interpret the patient’s silence or withdrawal as a personal rejection or a sign of giving up. They might pressure the medical team to prescribe stimulants or antidepressants in hopes of bringing back the vibrant person they once knew.

Here, the death doula serves as a gentle interpreter. We normalize the withdrawal of preparatory grief, helping the family comprehend that their loved one is not necessarily depressed, but is simply turning inward to pack their bags for a long journey.

When we lessen the family’s anxiety, we shield the patient from unnecessary medical interventions. This allows for a tranquil and respected transition, preventing the natural process from being misinterpreted.

The Revealing Nature of Life Review

A powerful tool in the death doula’s kit for distinguishing grief from depression is the invitation to reminisce. Life review is a natural activity for the dying. When we invite a client to share a memory or look at a photograph, their response is telling.

A client in the throes of preparatory grief may weep over the memory, but they will often engage with it. They feel the value of the life they lived.

Conversely, a client suffering from depression often views their past through a distorted lens. They may dismiss their achievements as meaningless or view their memories with apathy.

If the invitation to tell their story is met with persistent indifference or self-loathing, it serves as a strong indicator that the lens of their perception is clouded by depression, warranting clinical support.

Ethical Advocacy in Action

Ultimately, our advocacy must be rooted in the client’s autonomy. There are times when a client may choose to decline treatment for depression, preferring to navigate their darkness on their own terms.

As death doulas, we must respect this agency while ensuring it is an informed choice. Our goal is never to impose a specific “good death” upon anyone, but to ensure that the path they walk is chosen with clarity, not dictated by an untreated illness.

We voice our concerns to the medical team not to override the client, but to ensure the client is fully seen. We ask the difficult questions: “Is this silence peace, or is it paralysis?” When we pose this question, we prompt the medical system to halt and conduct a thorough examination, thereby guaranteeing that any available relief is presented.

A Final Act of Compassion

We must gently dismantle the belief that mental suffering is the price of admission for death. Honoring the dignity of the dying requires us to understand the difference between the pain of sorrow at a loss and the darkness of depression.

We ensure that their final days are not consumed by a treatable illness, but are instead preserved for the profound, sacred, and human experience of saying goodbye.

In being vigilant witnesses, we offer our clients the greatest gift possible: the clarity to experience their own ending.

References:

1. Chochinov, Harvey Max. “Dignity Therapy: Final Words for Final Days.” A groundbreaking text exploring how to alleviate distress and conserve a sense of meaning and purpose for patients nearing the end of life. ↩︎
2. Worden, J. William. “Grief Counseling and Grief Therapy.” A definitive clinical guide that offers rigorous frameworks for understanding the mechanisms of grief and distinguishing them from pathological responses. ↩︎
3. Dass, Ram & Mirabai Bush. “Walking Each Other Home: Conversations on Loving and Dying.” A spiritual exploration of how to remain present and open-hearted through the mystery of death, emphasizing presence over fear. ↩︎