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Late Stage and End-of-Life Care

Caregiving in the Final Stages of Life

 

In the final stages of many terminal illnesses, care priorities tend to shift. Instead of ongoing curative measures, the focus often changes to palliative care for the relief of pain, symptoms, and emotional stress. Ensuring a loved one’s final months, weeks, or days are as good as they can be requires more than just a series of care choices. Anticipating the demands of end-of-life caregiving can help ease the journey from care and grief towards acceptance and healing.

Understanding late-stage care

In the final stages of life-limiting illness, it can become evident that in spite of the best care, attention, and treatment, your loved one is approaching the end of his or her life. The patient’s care continues, although the focus shifts to making the patient as comfortable as possible. Depending on the nature of the illness and the patient’s circumstances, this final stage period may last from a matter of weeks or months to several years. During this time, palliative care measures can provide the patient with medication and treatments to control pain and other symptoms, such as constipation, nausea, or shortness of breath.

Even with years of experience, caregivers often find the last stages of life uniquely challenging. Simple acts of daily care are often combined with complex end-of-life decisions and painful feelings of bereavement. End-of-life caregiving requires support, available from a variety of sources such as home health agents, nursing home personnel, hospice providers, and palliative care physicians.

Identifying the need for end-of-life care

There isn’t a single specific point in an illness when end-of-life care begins; it very much depends on the individual. In the case of Alzheimer’s disease, the patient’s doctor likely provided you with information on stages in the diagnosis. These stages can provide general guidelines for understanding the progression of Alzheimer’s symptoms and planning appropriate care. For other life-limiting illnesses, the following are signs that you may want to talk to your loved one about palliative, rather than curative care options:

  • The patient has made multiple trips to the emergency room, their condition has been stabilized, but the illness continues to progress significantly, affecting their quality of life
  • They’ve been admitted to the hospital several times within the last year with the same or worsening symptoms
  • They wish to remain at home, rather than spend time in the hospital
  • They have decided to stop receiving treatments for their disease

Patient and caregiver needs in late-stage care

  • Practical care and assistance. Perhaps your loved one can no longer talk, sit, walk, eat, or make sense of the world. Routine activities, including bathing, feeding, toileting, dressing, and turning may require total support and increased physical strength on the part of the caregiver. These tasks can be supported by personal care assistants, a hospice team, or physician-ordered nursing services.
  • Comfort and dignity. Even if the patient’s cognitive and memory functions are depleted, their capacity to feel frightened or at peace, loved or lonely, and sad or secure remains. Regardless of location—home, hospital, hospice facility—the most helpful interventions are those which ease discomfort and provide meaningful connections to family and loved ones.
  • Respite Care. Respite care can give you and your family a break from the intensity of end-of-life caregiving. It may be simply a case of having a hospice volunteer sit with the patient for a few hours so you can meet friends for coffee or watch a movie, or it could involve the patient having a brief inpatient stay in a hospice facility.
  • Grief support. Anticipating your loved one’s death can produce reactions from relief to sadness to feeling numb. Consulting bereavement specialists or spiritual advisors before your loved one’s death can help you and your family prepare for the coming loss.