End-of-life care is different for each person. Each individual will have unique needs and receive specific advice, care, and support. It’s important to discuss any questions or concerns with the healthcare team. They are always willing to answer questions and support all those involved. It can be helpful to write down questions beforehand to ensure you understand what’s happening every step of the way.
When to consider end-of-life care
The decision to transition to end-of-life care is very dependent on the individual and their illness. For some life-limiting diseases, there are signs that show moving from curative to palliative care may be the best option. For example, multiple trips to the hospital emergency department to stabilize the illness may begin to affect the person’s quality of life. Other signs include a person deciding to stop receiving treatment and wishing to stay at home rather than spend time in the hospital. These signs indicate that end-of-life care will ensure your loved one can spend time with family and friends without the burden of hospital visits and treatments.
For those with Alzheimer’s disease or another form of dementia, the doctor will provide details on the stages of the disease. This will help the family decide when certain types of care are appropriate for their loved one.
The patient’s and caregiver’s needs in end-of-life care
As your loved one enters their end-of-life stage, their needs will change. These changes could include:
- Practical physical care and assistance: Help with bathing, dressing, and moving.
- Comfort and dignity: The ability to remain at home in comfort and peace.
- Grief support: Supporting your loved one to accept what is going to happen.
Planning for the end of life can ease stress and allow you to put all your love and attention into your loved one. Communicating with family and friends about your loved one’s wishes ensures those wishes can be met.
The caregiver also has needs during this time. A loved one’s deteriorating medical condition and the 24-hour demands of final-stage care may mean you need additional in-home help. Palliative homecare can provide emotional and spiritual support to both the patient and their family. Respite homecare can also give you and your family a much-needed break from the intensity of end-of-life caregiving. This could be for a few hours to allow you a break or 24/7 support to help care for your loved one.
Understanding the last days of life
What are the signs that end of life is approaching?
While it’s difficult to know exactly when someone will die, there are common signs that may indicate the last days or hours of life. These may include:
- Restlessness, confusion, or agitation.
- Increased sleep or periods of drowsiness.
- Loss of appetite.
- Irregular breathing or pauses in breathing.
- Swelling, coldness, or blue colouring in the hands or feet.
- Reports of seeing someone who has already died.
- Gurgling or crackling sounds with breathing.
How can I provide emotional support for my loved one?
Everyone has different needs, but some emotions are common to most dying patients. Fear of abandonment, of being a burden, loss of dignity, and loss of control are some of these factors. Here are some ways you can provide emotional support:
- Just be there: Talk, watch movies, read, or simply be present with the person.
- Allow them to express fears and concerns: Listen to their worries about dying and leaving family and friends behind.
- Reminisce: Talk about the person’s life and the memories you share.
- Be honest: Avoid withholding difficult information. Your loved one should be included in discussions that concern them.
- Respect their privacy: Give them space if they need it.
- Honor their wishes: Reassure the patient that you will honor advance directives, such as living wills.
What can I do to make my loved one more comfortable?
Knowing the steps you can take to provide comfort during the last days and hours before death is important. Here are a few ways to provide comfort:
- For not eating: Feed small spoonfuls of food. Use ice chips or a damp sponge to keep the mouth moist.
- For skin irritation: Apply lotion to the skin to soothe it and adjust the bed position to avoid sores.
- For pain: Give the pain medication as instructed by the doctor.
- For confusion: Speak calmly and be reassuring. Hold their hand or use a gentle touch if it’s comforting. Remind the person where they are and who is there.
Spiritual support also matters at the end of life because facing a terminal illness brings thoughts of death and meaning. It helps individuals find understanding, strength, and peace. Tailored to one’s beliefs, it can come from various sources and addresses needs such as purpose, love, belonging, and hope.
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