It can become apparent that your loved one is approaching the end of their life no matter the amount of treatment and care provided. When this happens, the focus changes from curative therapies to help them be as comfortable as possible to make the most out of their remaining time.
This stage can last for weeks, months, or even years, depending on your loved one’s circumstances. Family caregivers often find this final stage of the caregiving journey uniquely challenging and emotional. It can be frightening and overwhelming for everyone involved.
No matter your loved one’s situation, it’s essential to recognize that late-stage caregiving requires plenty of support. And by preparing for the transition to end-of-life care, you can reduce fear and confusion and make informed decisions to manage your loved one’s pain and symptoms.
When is it time to consider late-stage care?
There isn’t necessarily a specific point when end-of-life care starts. It depends on the individual and the progression of their illness and symptoms. For those with Alzheimer’s disease or another form of dementia, your loved one’s physician will have information on these later stages of the diagnosis and can provide you a general guideline for understanding the progression of symptoms and when to plan for appropriate care.
For other life-limiting illnesses, the following are signs that it might be time to have a conversation with your loved one and their care team about palliative care and hospice rather than pursuing curative care options:
- They have made multiple trips to the emergency room to help stabilize their condition, but the illness continues to progress significantly, affecting their quality of life.
- They have been admitted to the hospital several times with the same or worsening ailments in the last year.
- They wish to stay at home rather than spend time in the hospital receiving treatment.
- They had decided to decline to receive treatment for their illness.
Needs to Address for Patients and Caregivers
Families will need to address their loved one’s changing needs as they enter into late-stage care and their own emotional and physical needs. This can include the following:
Additional Care and Assistance
Maybe your loved one can no longer sit up, walk, talk, eat, or understand the world around them. Activities such as feeding, bathing, dressing, and toileting may require complete support. Many families wish to take care of their loved ones themselves as much as possible and can find supplement support from home caregivers, hospice teams, or physician-ordered nursing services.
Dignity and Comfort
Even if your loved one’s memory and cognitive functions are affected, their ability to feel at peace or frightened, loved or lonely, secure and sad remain. No matter if they are being cared for in the home, hospital, or hospice facility, the most important interventions are those that help ease discomfort and pain and provide the chance for them to experience connections with family and close friends.
Respite Care
Being there is important, and it’s best to provide care as a team. Respite care can give you and your family members a break from the intensity of end-of-life caregiving. There are many options available to help your family during this time, from hospice volunteers, home caregivers, or having a brief inpatient stay in a hospice facility.
Grief Support
This is a challenging time for everyone involved. Anticipating your loved one’s death can produce unexpected reactions from relief, sadness, guilt, and numbness. There’s no timeline for grief. Consulting with bereavement specialists or spiritual advisors before your loved one’s passing can help everyone prepare and cope.
How to Approach End-of-Life Planning
Understanding your loved one’s preference for treatment in the final stages allows caregivers to devote their time to compassionate care. It’s important for anyone diagnosed with a life-limiting illness to discuss their feelings and wishes with their family before a medical crisis occurs. This is not a conversation you need to have all at once or alone. Hospice and palliative care teams can help facilitate these discussions with your family.
Start the conversation early. End-of-life care proceeds much more smoothly when conversations about placement, treatment, and wishes are discussed as early as possible. Talk about specific hospice and palliative care services, spiritual practices, and memorial traditions and preparations beforehand.
Financial and legal advice is crucial to discuss while your loved one can participate. To make sure their preferences are known and established, ensure your loved ones have legal documents such as a living will, power of attorney, or advance directives.
Focus on their wishes and values. If your loved one could not prepare a living will or advanced directive while still cognizant, act on what you know or believe their desires to be. To the furthest extent possible, consider placement, treatment, and end-of-life decisions from your loved one’s point of view.
Communicate with family members. Choose a primary decision-maker in the family who will manage information and facilitate the involvement of additional family members and medical support. Clear communication is imperative when making decisions for or against sustaining or life-prolonging treatments. Be sure to arrange visitations with family members and friends to spend time with your loved one.
If children are present, make efforts to include them. Children need age-appropriate and truthful information about their loved one’s condition and any emotional or physical change they perceive in you. Children can be deeply affected by circumstances they don’t understand and can benefit from drawing pictures, using puppets and toys to simulate feelings, or hearing stories that explain late-stage care events in ways they can understand.
Late-Stage Placement and Care Options
Meeting the needs of your loved one and the 24-hour demands of final-stage care means that families need additional support, whether in the home or at a facility. Every patient’s needs are different, and many prefer to remain at home for the final stages in comfortable, familiar surroundings.
Multiple changes can be difficult for a patient in late-stage care, so it’s easier to adjust to a new home or care facility before the end stage of care begins. When caring for your loved one, planning ahead is important.
The Difference Between Hospice and Palliative Care
Hospice and palliative care offer relief from symptoms and pain for patients nearing the end of their lives. Both also help address patients’ spiritual, emotional, and social needs and their families. In fact, hospice is considered a type of palliative care for people in their final stages. Let’s compare the differences between hospice and palliative care.
Hospice Care
The patient is not seeking curative treatments but managing pain and other symptoms to improve the quality of life for the time they have remaining. Hospice is typically for patients with a life of six months or less.
Palliative Care
Palliative care patients can seek treatment options while receiving medical help to manage pain and other symptoms. Palliative care is generally for people at any stage of an illness or managing chronic pain. Patients commonly seek relief from pain, fatigue, nausea, or the stress that comes with a serious illness or side effects from medical treatment.
Patients can receive care at the following locations:
- Home
- Assisted or Independent living facility
- Nursing home
- Hospice facility
- Hospital
How to decide to care for a late-stage patient at home
Here are some questions to ask yourself when approaching end-of-life care in a home setting:
- Do your loved one’s end-of-life care preferences include remaining at home?
- Will your home accommodate a wheelchair, hospital bed, and bedside commode?
- Are you able to access transportation for routine and emergency care?
- Are you emotionally prepared to care for your loved one?
If you, your loved one, or family members are having conversations about late-stage care and would like more information, our team can help. Professional caregivers can provide support during the end-of-life journey, whether in a home or facility. Contact us for additional information.