God sure knows when to reinforce my calling (a long-term goal and possibly a retirement project) lest I get distracted and focus on other things. I stumbled upon this article from The Gospel Coalition a couple of days ago, and this is exactly what I needed for the hospice project I am planning to propose to my siblings. I thought I’d share it here as well to help those who are going through a similar situation. 🙏
Original Article Link: https://www.thegospelcoalition.org/article/expect-loved-one-hospice/
“What To Expect When A Loved One Enters Hospice”
By Kathryn Butler
I recently lost a dear friend to cancer. She’d struggled with treatments and recurrence for years, and when her doctor finally said the heavy word “hospice,” she and her family were neither surprised nor despairing. As Christians, they drew comfort from the assurance she’d be with the Lord after she took her last breath (Rom. 14:8; 2 Cor. 4:17–18).
And yet, although my friend embarked on her hospice journey with full acceptance, none of her family was prepared for the tumult of emotions her final days incited. They trembled and choked back tears when she bolted upright in agitation. When she no longer responded to their voices, they nursed the ache of loss. Throughout, they struggled to reconcile the grim realities of death with the mother, sister, and wife they so cherished.
Families with loved ones in hospice all too frequently weather such storms. As the wages of our sin (Rom. 6:23), death is by nature harrowing, even when anticipated. We weren’t meant for death, and those of us who encounter it often struggle with lingering grief, confusion, and regret afterward, especially when it steals away someone we dearly love.
With a million and a half people in the U.S. receiving hospice care annually, many families will walk this troubling road, suffering doubts and heartache along the way. How do we shepherd caregivers and families as they aim to love the dying? How do we walk with them through the valley of the shadow of death, reminding them all the while of the Good Shepherd whose love covers them when the light dwindles (Ps. 23:4)?
𝗪𝗵𝗮𝘁 𝗛𝗼𝘀𝗽𝗶𝗰𝗲 𝗜𝘀
Misunderstandings about hospice abound and contribute to the pain families bear. Many people equate hospice with “giving up” on a loved one. Others confuse it with physician-assisted suicide and euthanasia. Still more have an accurate idea of hospice but can’t bring themselves to say goodbye to someone they can’t fathom living without.
To clarify, hospice care seeks to minimize pain and suffering at the end of life among those with terminal illnesses. A multidisciplinary team, usually comprised of physicians, nurses, social workers, chaplains, and health aides, provides medical care as well as spiritual and social support with a focus on symptom control and quality of life, rather than on cure. Although we often associate hospice with cancer, the most common qualifying diagnoses are severe dementia, emphysema, and heart failure.
For people with a life expectancy of months, hospice services often begin as regular home visits from nurses, social workers, and home health aides to ensure patients are stable and comfortable. As the illness advances, support increases, and eventually the dying require continuous care at the bedside and frequent doses of medications to ameliorate pain, anxiety, and air hunger. In the home, this care often falls to loved ones, which can be emotionally traumatic. In such circumstances, a hospice house, where staff nurses monitor patients 24/7, may be a better alternative.
People can only receive hospice services if they have a life expectancy of six months or less. Such patients, after consultations with doctors they trust, accept that further interventions for a cure would be futile (e.g., a cancer has metastasized to other organs and treatment options have run out). In hospice, medical care continues, but that care shifts to focus on lessening symptoms rather than eradicating the disease.
Studies suggest that rather than indicating caregivers have “given up” on patients, this shift in care can actually increase the life expectancy of terminally ill patients for up to three months. In our highly technological medical system, accepting the inevitability of death has a clear, measurable benefit.
It also has a biblical precedent. Although Scripture directs us to honor life (Ex. 20:13), it also reminds us our times are in God’s hand (Ps. 31:15). Like the grass of the field, we wither and fade (Isa. 40:7–8); until Christ returns all of us will succumb to death (Rom. 5:12). When we deny our mortality and chase after treatments that don’t promise cure, we dismiss God’s grace in Christ and the power of his resurrection. Christ has transformed death, swallowing it up in victory (1 Cor. 15:54) such that, as the Heidelberg Catechism aptly states, it’s no longer “a payment for our sins, but only a dying to sins and an entering into eternal life.”
𝗪𝗵𝗮𝘁 𝗛𝗼𝘀𝗽𝗶𝗰𝗲 𝗜𝘀𝗻’𝘁
While hospice reflects biblical teaching, the same can’t be said for euthanasia or physician-assisted suicide (PAS). Families facing hospice for a loved one may confuse these practices, especially given the terminology of “Medical Aid in Dying,” or MAiD, now adopted in Canada and used in the U.S. with increasing frequency. While in hospice, death occurs secondary to an underlying illness, in MAiD, terminally ill patients seek medical means to deliberately end their lives.
In euthanasia, for example, a healthcare provider administers a lethal dose of medication––often an injection––on a patient’s request. Similarly, in PAS, doctors prescribe a dose of pills for a patient to take on his or her own. In both cases, the “aid in dying” isn’t symptom support but rather a lethal dose of medication.
As the legalization of PAS has steadily increased in the U.S. over the past 20 years, it’s crucial to understand its distinction from hospice. In hospice, the aim is to alleviate suffering from futile or excessively burdensome measures. People can “graduate” from hospice; if a patient unexpectedly improves and is no longer deemed terminal, clinicians rejoice and hospice services are discontinued. PAS, by contrast, involves the active taking of another life with the explicit goal to end it, and it violates God’s Word (Ex. 20:13).
𝗪𝗵𝗮𝘁 𝘁𝗼 𝗘𝘅𝗽𝗲𝗰𝘁
The knowledge that hospice care aligns with biblical teachings can provide solace to families. Yet even with this consolation, watching a loved one die can be crushing. Many families embark on this journey with confidence, only to find the unsettling details of dying overwhelm them.
The following common changes may occur when death is near, which may trouble those at the bedside:
As a dying person’s organs shut down, 𝗯𝗿𝗲𝗮𝘁𝗵𝗶𝗻𝗴 𝗿𝗲𝗳𝗹𝗲𝘅𝗶𝘃𝗲𝗹𝘆 𝗯𝗲𝗰𝗼𝗺𝗲𝘀 𝗿𝗮𝗽𝗶𝗱 to remove excess acid from the bloodstream. As such breathlessness worsens anxiety and fatigue, nurses will administer a narcotic (usually morphine) or a sedative to help slow the breathing.
Intestines shut down as death nears. 𝗣𝗲𝗼𝗽𝗹𝗲 𝘄𝗶𝗹𝗹 𝗵𝗮𝘃𝗲 𝗻𝗼 𝗮𝗽𝗽𝗲𝘁𝗶𝘁𝗲, and although loved ones may worry about starvation, forcing them to eat or drink leads to vomiting or abdominal cramping.
In the setting of dehydration close to death, 𝘁𝗵𝗲 𝗺𝗼𝘂𝘁𝗵 𝗮𝗻𝗱 𝗹𝗶𝗽𝘀 𝗱𝗿𝘆 𝗮𝗻𝗱 𝗰𝗿𝗮𝗰𝗸. Hospice care workers provide moist mouth swabs to counteract the discomfort.
𝗔𝗴𝗶𝘁𝗮𝘁𝗶𝗼𝗻, 𝗱𝗲𝗹𝗶𝗿𝗶𝘂𝗺, 𝗮𝗻𝗱 𝗵𝗮𝗹𝗹𝘂𝗰𝗶𝗻𝗮𝘁𝗶𝗼𝗻𝘀 are common near death and can be especially upsetting to witness. In the mildest cases, patients will see people from their past, which may alarm onlookers. In the most distressing, the dying will suddenly panic or lash out at others with cruel insults. Clinicians give medications to calm patients and avoid such outbursts, but when they do occur, delirious patients’ words can deeply hurt those they love. In such moments, we can reassure families that death affects the mind as well as the body and that their loved ones are unaware of their actions. Agitation near death reflects the disease, not the patient’s true thoughts and feelings.
People 𝗴𝗿𝗮𝗱𝘂𝗮𝗹𝗹𝘆 𝗹𝗼𝘀𝗲 𝗰𝗼𝗻𝘀𝗰𝗶𝗼𝘂𝘀𝗻𝗲𝘀𝘀 as death nears. However, in the days to hours before death, some suddenly awaken and carry on clear, coherent conversations. Called “𝘁𝗲𝗿𝗺𝗶𝗻𝗮𝗹 𝗹𝘂𝗰𝗶𝗱𝗶𝘁𝘆,” this phenomenon is poorly understood but well documented and can confuse loved ones who mistake the sudden clarity for clinical improvement. A good approach is to treat these moments as gifts from the Lord, offering loved ones a final glimpse of the person they’ve treasured.
Even when the dying are unresponsive, evidence suggests 𝘁𝗵𝗲𝘆 𝗰𝗮𝗻 𝘀𝘁𝗶𝗹𝗹 𝗵𝗲𝗮𝗿, with their brains responding to sounds as distinctly as do awake, healthy individuals. This can provide families with enormous comfort, as it means their loved one may still hear and understand their words. Encourage families to speak to their loved one, to read Scripture, to pray aloud, and to sing hymns and favorite songs. Such connection can provide much-needed closure and solace to the living, and minister lovingly to the dying.
In the last 24 hours, 𝘁𝗵𝗲 𝘀𝗸𝗶𝗻 𝘁𝘂𝗿𝗻𝘀 𝗺𝗼𝘁𝘁𝗹𝗲𝗱 𝗮𝗻𝗱 𝗯𝗹𝘂𝗶𝘀𝗵, especially in the hands and feet. This is normal and signals the circulatory system shutting down.
The last few hours of life are often marked by 𝗱𝘆𝘀𝗿𝗲𝗴𝘂𝗹𝗮𝘁𝗲𝗱 𝗯𝗿𝗲𝗮𝘁𝗵𝗶𝗻𝗴. People will breathe deeply and rapidly for several breaths, then not breathe at all for up to two minutes. Secretions pooling in the airways also create an unsettling rattling sound with each breath. Additionally, relaxation of the vocal cords can produce a sound similar to moaning, even in the absence of discomfort. While these changes are upsetting to witness, at this point patients are unaware of their surroundings and unlikely to experience suffering.
𝗛𝗼𝗽𝗲 𝗘𝗻𝗱𝘂𝗿𝗲𝘀
In addition to the troubling realities outlined above, families of hospice patients may wrestle with questions about the faith and salvation of their loved one. If a loved one isn’t a believer, relatives may urge nurses to withhold sedatives, clinging to hope for a deathbed conversion. If a loved one has proclaimed faith, moments of agitation may raise doubts about the sincerity of that profession.
While their heartache is understandable, to withhold medication and incur unnecessary suffering is neither loving nor compassionate. As solace, we can point families to the thief on the cross (Luke 23:39–43), whom Jesus invited into his kingdom as he was dying. We can reassure them that the Holy Spirit can work in someone’s heart regardless of their capacity for language or cognition, and the Lord can bring all he wills to himself (Eph. 1:3–7). The good news of the gospel declares that salvation depends not on us but on God’s grace––and he can turn every heart he wills from stone into flesh (Ezek. 36:26).
Above all, when families walk alongside a loved one in hospice, they show him or her, as well as surrounding caregivers, the character of Christ.
To abide with another through death is to love in the sacrificial, soul-weary way our pierced Savior loved us first (Matt. 26:38; John 13:34–35; 1 John 4:19). It’s to weep with those who weep (Rom. 12:15) and to bear another’s burdens (Gal. 6:2). It’s to offer a loved one a tangible reminder––perhaps with a hymn heard through the shadows, perhaps with a gentle touch––that God’s love endures forever (Ps. 107:1) and that, in Christ, nothing––not even death––can pry his beloved away from his grasp (Rom. 8:38–39).
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