Illustration by Matthew Billington
Ask a Doctor is a series of physician-authored columns offering insights and advice on common health topics. It is not a substitute for seeking medical care.
Most of us can picture someone of advanced years who might be described as fragile. They might move slowly, experience unintentional weight loss, or need extra help managing day-to-day tasks, from cooking and cleaning to dressing and bathing. In the medical world, we often describe this condition of deteriorating health and function as frailty. As a family physician caring for older adults, I see this commonly in my patients, especially those living with pre-existing chronic conditions such as dementia, chronic kidney disease, chronic obstructive pulmonary disease, or heart disease.
Generally, these individuals go through a slow decline over a period of years, followed by a sudden downturn at the very end of life that can occur over weeks or days. This “active dying” phase often takes place at home, yet many family members or caregivers feel unprepared for what to expect.
Once, while making a house call for a 93-year-old patient whose health had been gradually deteriorating – he had a litany of chronic conditions and was steadily losing weight and muscle mass, making it difficult for him to get out of bed or stay alert – his daughter asked me for advice. “I know Dad doesn’t have much time,” she said. “Sending him to the hospital won’t change anything. But what do I do? How to I manage this at home?”
I’ve heard similar questions numerous times over the years while caring for older adults dying at home not from an aggressive illness, but from decades of chronic disease and growing frailty. If you have a loved one in a similar situation, here are some things to know.
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People often associate palliative care with hospitals, but it can also be provided to individuals living at home or in the community (such as in a supported living environment). A palliative approach involves a shifting of priorities, taking into account a patient’s physical, emotional, and spiritual needs and focusing on alleviating symptoms. While patients may continue to receive active medical treatment during this period, comfort, not cure, becomes the greater focus.
I counsel caregivers that each individual’s dying experience will be different. However, there are some common physical concerns that older patients entering their last days will experience, including changes in breathing patterns; increased drowsiness or agitation; and pain or discomfort due to immobility. These symptoms can often be managed at home with prescriptions from a patient’s family doctor or palliative physician. For example, opioids can reduce pain and the sensation of shortness of breath, and antipsychotics can assist with confusion or restlessness. Often, medications prescribed for palliative care can be given under the skin through a device known as a subcutaneous butterfly, allowing for repeated delivery without multiple needle pokes or necessitating safe swallowing of pills. As many will not have the luxury of 24-hour nursing available in the home, caregivers can easily learn to administer these medications themselves with coaching.
There are a few interventions we tend to discourage at the end of life. Thirst and hunger signals often diminish, and generally food and drink by mouth are given only as the patient accepts. Artificial hydration (given intravenously or under the skin) is generally not recommended, as hydration does little for comfort, but can prolong the dying process. Instead, frequent oral care through rinses and sponging can alleviate dry lips and mouth.
Family members or caregivers can help their dying loved one by creating a comfortable physical environment through music or pleasant aromas, bringing cherished items into the space, or gentle massage or handholding. They can also incorporate spiritual or religious elements, including reading religious texts, prayer, or inviting clergy or chaplains to attend.
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What happens near the end
While it can seem morbid to anticipate what a person’s final moments may look like, being aware of what to expect can be helpful.
Caregivers may notice their loved one’s breathing becomes more irregular, with longer pauses in between breaths that can last several seconds or even minutes. This indicates that the brain’s pathways for regulating breathing are no longer operating normally, signalling that death is imminent. Other changes may include a rattling noise with breaths (a “death rattle”), as saliva becomes difficult to clear. This sound can be troubling for those around the dying person. Medications can be given at this time to help reduce secretions and minimize the noise.
Incontinence products such as pads and briefs can be useful to manage bowel and bladder elimination. As urination will occur more frequently than stools, an indwelling catheter may be considered to reduce the frequency of incontinence product changes.
When death finally occurs, breathing will cease and a pulse can no longer be felt. If the eyes are open, the pupils will appear dilated and no longer constrict with light. Within several minutes, the skin takes on a waxy appearance and the bladder and bowels relax and empty.
The muscle rigidity of rigor mortis typically sets in one or two hours following death, so caregivers have the opportunity to comfortably reposition their loved one’s body before this time.
Preparing for the practicalities
When a loved one is dying at home, families face several logistical challenges, including accessing palliative care. According to the Canadian Institute for Health Information, as the population ages and individual cases become increasingly medically complex, more people will face dying at home with palliative care than in the past. However, access varies widely across the country.
I encourage caregivers to reach out to their province’s public home care provider to ask what in-home nursing supports or consultative services might be available, such as assistance with personal care needs or respite care for caregivers. Palliative care specialists can provide direction around symptom management and further support primary care teams.
In addition, people who need to take time off work to care for a dying loved one may qualify for End of Life employment insurance or caregiver tax benefits.
Finally, many caregivers are unsure about who they need to immediately notify at the time of death. While unanticipated deaths need to be reported through 911, each province has their own protocols for what to do when there is an expected death at home. Some provinces have forms that families can fill out in advance, allowing them to bypass calling an ambulance; instead, they can contact a predetermined funeral home when they are ready. Contact your provincial or territorial health care authority to learn more.
Dr. Carolyn Wong is a family physician in Calgary with a focused practice in caring for older adults. She works in clinical settings, long-term care, and on home visits in the community. Dr. Wong is also heavily involved in medical education at the Cumming School of Medicine and Department of Family Medicine at the University of Calgary.