Late Stage and End-of-Life Care
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 care giving can help ease the journey from care and grief towards acceptance and healing.
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 care giving requires support, available from a variety of sources such as home health agents, nursing home personnel, hospice providers, and palliative care physicians.
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 curativ, 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
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 care giving 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 advisers before your loved one’s death can help you and your family prepare for the coming loss.
When caregivers, family members, and loved ones are clear about the patient’s preferences for treatment in the final stages of life, they’re free to devote their energy to care and compassion. To ensure that everyone in the family understands the patient’s wishes, it’s important for anyone diagnosed with a life-limiting illness to discuss their feelings with loved ones before a medical crisis strikes.
Prepare early. The end-of-life journey is eased considerably when conversations regarding placement, treatment, and end-of-life wishes are held as early as possible. Consider hospice and palliative care services, spiritual practices, and memorial traditions before they are needed.
Seek financial and legal advice while your loved one can participate. Legal documents such as a living will, power of attorney, or advance directive can set forth a patient’s wishes for future health care so family members are all clear about his or her preferences.
Focus on values. If your loved one did not prepare a living will or advance directive while competent to do so, act on what you know or feel his or her wishes are. Make a list of conversations and events that illustrate his or her views. To the extent possible, consider treatment, placement, and decisions about dying from the patient’s vantage point.
Address family conflicts. Stress and grief resulting from a loved one’s deterioration can often create conflict between family members. If you are unable to agree on living arrangements, medical treatment, or end-of-life directives, ask a trained doctor, social worker, or hospice specialist for mediation assistance.
Communicate with family members. Choose a primary decision maker who will manage information and coordinate family involvement and support. Even when families know their loved one’s wishes, implementing decisions for or against sustaining or life-prolonging treatments requires communication and coordination.
If children are involved, make efforts to include them. Children need honest, age-appropriate information about your loved one’s condition and any changes they perceive in you. They can be deeply affected by situations they don’t understand, and may benefit from drawing pictures or using puppets to simulate feelings, and hearing stories that explain events in terms they can grasp.
A terminally ill patient’s deteriorating medical condition, increased physical safety needs, and the 24-hour demands of final-stage care often mean the primary caregiver will need additional in-home help, or for the patient to be placed in a hospice or other care facility. In many cases, patients prefer to remain at home in the final stages of life, in comfortable surroundings with family and loved ones nearby.
While every patient and each family’s needs are different, multiple changes can be difficult for a terminally ill patient, especially one with advanced Alzheimer’s disease or other dementia. It’s easier for a patient to adjust to a new home or care facility before they’re at the end stage of their illness. In these situations, planning ahead is important.
Hospice is typically an option for patients whose life expectancy is six months or less, and involves palliative care (pain and symptom relief) to enable your loved one to live his or her final days with the highest quality of life possible. Hospice care can be provided on site at some hospitals, nursing homes, and other health care facilities, although in most cases hospice is provided in the patient’s own home. With the support of hospice staff, family and loved ones are able to focus more fully on enjoying the time remaining with the patient.
When hospice care is provided at home, a family member acts as the primary caregiver, supervised by the patient’s doctor and hospice medical staff. The hospice team makes regular visits to assess the patient and provide additional care and services, such as speech and physical therapy or to help with bathing and other personal care needs. Hospice staff members remain on-call 24 hours a day, seven days a week.
A hospice team provides emotional and spiritual support according to the wishes and beliefs of the patient. They also offer emotional support to the patient’s family, caregivers, and loved ones, including grief counselling.
Some questions to ask yourself when deciding to undertake end-of-life care of a loved one:
Has the patient set forth his or her preferences for end-of-life care that include remaining at home?
Is qualified, dependable support available to ensure 24-hour care?
Will your home accommodate a hospital bed, wheelchair, and bedside commode?
Are transportation services available to meet daily needs and emergencies?
Is professional medical help accessible for routine and emergency care?
Are you able to lift, turn, and move your loved one?
Can you meet your other family and work responsibilities as well as your loved one’s needs?
Are you emotionally prepared to care for your bed-ridden loved one?
Adapted from: The Loss of Self: A Family Resource for the Care of Alzheimer's Disease, Donna Cohen, PhD, and Carl Eisdorfer, PhD.
While the symptoms in the final stages of life vary from patient to patient and according to the life-limiting illness, there are some common symptoms experienced near the end of life that caregivers can provide comfort for. It’s important to remember, though, that experiencing any of these symptoms does not necessarily indicate that the patient’s condition is deteriorating or that death is close.
Common Symptoms in End-of-Life Care
How to provide comfort
Plan visits and activities for times when the patient is most alert.
Many patients are still able to hear after they are no longer able to speak, so talk as if he or she can hear.
Confusion about time, place, identity of loved ones
Speak calmly to help re-orient the patient. Gently remind the patient of the time, date, and people who are with them.
Loss of appetite, decreased need for food and fluids
Let the patient choose if and when to eat or drink. Ice chips, water, or juice may be refreshing if the patient can swallow. Keep the patient's mouth and lips moist with products such as glycerin swabs and lip balm.
Loss of bladder or bowel control
Keep the patient as clean, dry, and comfortable as possible. Place disposable pads on the bed beneath the patient and remove them when they become soiled.
Skin becoming cool to the touch
Warm the patient with blankets but avoid electric blankets or heating pads, which can cause burns.
Laboured, irregular, shallow, or noisy breathing
Breathing may be easier if the patient's body is turned to the side and pillows are placed beneath the head and behind the back. A cool mist humidifier may also help.
Source: National Cancer Institute
As with physical symptoms, every patient’s emotional needs in the final stages of life also differ. However, some emotions are common to many patients during end-of-life care. Many worry about loss of control and loss of dignity as their physical abilities decline. It’s also common for patients to fear being a burden to their loved ones yet at the same time also fear being abandoned.
Late-stage caregivers can offer emotional comfort to their loved ones in several different ways:
Keep the patient company. Talk to your loved one, read to him or her, watch movies together, or simply sit and hold their hand.
Refrain from burdening the patient with your feelings of fear, sadness and loss. Instead, talk to someone else about your feelings.
Allow the patient to express fears of death. It can be difficult to hear a loved one talk about leaving family and friends behind, but communicating their fears can help them come to terms with what’s happening. Try to listen without interrupting or arguing.
Allow them to reminisce. Talking about their life and the past is another way some patients gain perspective on their life and the process of dying.
Avoid withholding difficult information. If they’re still able to comprehend, most patients prefer to be included in discussions about issues that concern them.
Honour their wishes. Reassure the patient that you will honour their wishes, such as advance directives and living wills, even if you don’t agree with them.
Respect the patient’s need for privacy. End-of-life care for many people is often a battle to preserve their dignity and end their life as comfortably as possible.
The end-of-life period—when body systems are shutting down and death is imminent—typically lasts from a matter of days to a couple of weeks. Some patients die gently and tranquilly, while others seem to fight the inevitable. Reassuring your loved one it is okay to die can help both of you through this process. Decisions about hydration, breathing support, and other interventions should be consistent with your loved one’s wishes and advance directives.
After the patient has passed away, some family members and caregivers draw comfort from taking some time to say their last goodbyes, talk, or pray, before proceeding with final arrangements. Give yourself that time if you need it.
As impossible as it may seem, taking care of yourself during your loved one’s final stages is critically important. Research shows spousal caregivers are more likely to experience despair while adult children find fulfilment through their care giving roles. In any case, it is important to learn how to adjust, gain acceptance, and move on.
Final stage care giving for patients with Alzheimer’s disease or other dementia can create unique challenges. In most cases, caregivers have been grieving physical, cognitive, and behavioural regression for years. Many struggle to make difficult treatment, placement, and intervention choices through a prism of continuous and profound loss. But as your loved one’s serious decline becomes more evident, the skills and understanding cultured during care giving can keep you engaged and committed.
At this stage in the progression of Alzheimer’s disease, a patient can no longer communicate directly, is totally dependent for all personal care, and is generally confined to bed. Unable to recognize once-cherished people and objects, or to verbally express basic requirements, the person with Alzheimer’s completely depends on sensitive caregivers to advocate, connect, and attend to her needs.
Even in the last stages, patients with Alzheimer’s disease communicate discomfort and pain. Pain and suffering cannot be totally eliminated, but you can help make them tolerable.
Managing pain and discomfort requires daily monitoring and reassessment of subtle nonverbal signals. Slight behavioural changes can signal unmet needs. Communicating written observations, times, and events to your medical team will provide valuable clues about your loved one’s pain status. The soothing properties of touch, massage, music, fragrance, and a loving voice can also reduce pain. Be open to trying different approaches and observe your loved one’s reactions.
Even when patients cannot speak or smile, their need for companionship remains. The patient can no longer recognize you, but may still draw comfort from your touch or the sound of your voice.
Staying calm and attentive will create a soothing atmosphere, and communicating through sensory experiences such as touch or singing can be reassuring to your loved one.
Contacts with pets or trained therapy animals can bring pleasure and ease transitions for even the most frail.
Surrounding a loved one with pictures and mementos, reading aloud from treasured books, playing music, giving long, gentle strokes, reminiscing, and recalling life stories promote dignity and comfort all the way through life’s final moments.
Ironically, the extended journey of a disease such as Alzheimer’s gives families the gift of preparing for, and finding meaning in, their loved one’s end of life. When death is slow and gradual, many caregivers are able to prepare for its intangible aspects, and to support their loved one through the unknown. Even with years of grief, others find themselves unprepared and surprised when death is imminent.
Talking with family and friends, consulting hospice services, bereavement experts, and spiritual advisers can help you work through these feelings and focus on your loved one. Hospice and palliative care specialists and trained volunteers are able to assist not only the dying person, but also caregivers and family members.
From the moment a loved one is diagnosed with a terminal illness, a caregiver’s life is never the same. It can, however, be happy, fulfilling, and healthy again. Take time to reflect on your loved one’s life and remember the quality time that you were able to share together.
Join a caretakers’ bereavement support group. Being with others who know your situation can help you understand your feelings.
Enrol in an adult education or fitness class, join a book club, or volunteer. Acquiring new skills and staying physically active can promote healing.
Create lasting tributes to your loved one. Consider memorial sites, scholarships, plaques, scrapbooks, or charitable contributions to honour their memory.
Write a story, create a poem, or make a tape. Share your loved one’s unique story with family members and other caregivers.
Use your knowledge to help another. Contact your local Alzheimer’s Association or hospice provider and ask them to pair you with a brand new caregiver.
Keep a journal. Writing down thoughts and feelings can provide a release for your emotions.
Talk to a therapist or grief counsellor. Giving yourself permission to find new meaning and relationships can be difficult, but you have earned health and happiness.
Your acts of care and connection sustained your loved one through a difficult and perhaps long passage. Sharing what you have learned, cultivating happiness, and finding new meaning can create a fitting finale to your care giving journey.
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Robert and Jeanne Segal are co-founders and publishers of Helpguide.org. Their mission is to provide you and your family with mental health information you can trust. Their expert, ad-free resources empower you with the knowledge and encouragement you need to take charge of your life and make healthy choices. We believe that with support and self-help options, you can understand, prevent, and resolve many of life’s challenges.