Supporting a parent through the process of dying can be highly challenging and emotional. Here, we’ve provided some definitions and information to help you help your loved one through palliative and end-of-life care.
What is palliative care?
Palliative care — also known as late-stage care, end-of-life care, or hospice care — is specialized medical care for people who have serious, often life-threatening, illnesses.
The goal of palliative care isn’t to cure disease, but rather to improve quality of life for patients and their family members. It focuses on providing relief from the stress and symptoms (like pain, nausea, depression or anxiety) of an illness so that patients can have the most dignity and best possible quality of life. Palliative care includes not just medical care (by doctors and nurses), but also social, spiritual, and psychological care — for the patient and for their family members.
It’s important to note that a person doesn’t need to be actively dying to access palliative care. As well, palliative care can take place at the same time as a person is undergoing after-treatment for illness. Many palliative care plans last for weeks, months or even years.
What is end-of-life care?
As its name suggests, end-of-life care (EOLC) is a specific type of palliative care that occurs when a patient is closer to death. Its focus is on alleviating pain and other symptoms, allowing a person to die with comfort and dignity, and — ideally — surrounded by the people they love in a setting that they choose.
Where does palliative care happen?
Palliative care can happen in a variety of settings:
- at home, often with the help of home-care programs
- in a hospital, sometimes in a special palliative-care unit
- at a long-term care facility, such as a nursing home
- in a hospice: a specialized, palliative-care building or residence. These are relatively rare in Canada.
When to start planning for end-of-life care
Many seniors live well for many years with chronic health problems or with diseases like cancer, Parkinson’s or Alzheimer’s. But there may come a point where it’s clear that the disease is progressing and that your loved one is growing weaker. During this time, medical care may begin to shift toward palliative and then toward end-of-life care — or from a focus on curing or “living well” with a disease to “dying well.”
This transition may be sudden or gradual, and it will be different for every person and their family. You may notice some specific changes or developments that signal that your mom or dad is moving toward needing EOLC. For example:
- They are too tired or weak to perform basic tasks of daily living, like getting dressed, bathing, or getting out of bed.
- They’ve made multiple trips to the emergency room, or been admitted to the hospital several times within the last year with the same or worsening symptoms.
- They have a disease or illness that has progressed significantly and is affecting their quality of life.
- They no longer want to receive treatment for the disease.
- Their healthcare team has advised you that more treatment will not necessarily prolong or add quality to life.
If you think that your parent might benefit from palliative or end-of-life care, it’s okay to speak up: talk to their doctor or a member of their healthcare team about options for improving quality of life and dignity.
Getting your affairs in order
Part of end-of-life care is administrative. Making sure that your parent’s legal and financial affairs are in order can make the time before and following death less stressful and more straightforward. You don’t have to wait until your parents are ill or declining in order to have these conversations. If you can, talk to your mom or dad about their values and wishes around death and dying, as well as funeral arrangements: what kind of ceremony would they like, if any? Do they prefer burial or cremation? And make sure they have an updated will, powers of attorney, and advance care directive.
Care at the end of life
Even if you’ve been caring for your parent for many years now, the shift to EOLC is a uniquely challenging and emotional time. You may feel a wide range of emotions: sorrow and anxiety, anger and denial, anxiety, guilt, or even relief that your mom or dad may not have to struggle much longer. All these emotions are normal.
If you’re struggling to cope with strong emotions, you can talk to a member of your parent’s palliative care team: nurses, social workers, chaplains and other care providers may all be available to help you sort out your feelings, or can refer you to the proper support. The hospital or palliative care centre may also offer support group for caregivers, or be able to refer you to a support group in the community.
Signs that death is near
As death approaches, families will need to make decisions about care: for example, whether to provide food and fluids, or treat infections. If the patient isn’t able to make these decisions, then a substitute decision-maker (usually the person who holds power of attorney) may be asked to make these choices. It can help to have talked about these issues with your parent in advance. If you are the substitute decision-maker, it can help to ask “What would Dad want in this situation?”
- Notable weakness and decrease in energy. For example, your parent is no longer strong enough to get out of bed and sleeps most of the time. They are less alert, and have little energy to talk, eat or drink.
- Little or no appetite for food and drink. As an illness progresses, there comes a point where the body isn’t able to use the nutrients in food, and the person will lose weight and become increasingly tired. This can be quite upsetting or difficult for family members, who want to nurture their loved one by providing the familiar comfort of food. It can help to know that people at the end of life do not become stronger and live longer when they eat more.
- Dramatic fluctuations in condition. A person can go from looking quite good to seeming as though they have only hours to live, and the opposite. This can be perplexing and exhausting for family and friends.
- Difficulty recovering from treatment like surgery, chemotherapy or radiation therapy. These treatments demand a lot of energy — sometimes more energy than your parent has. For this reason, your healthcare team may hesitate to provide further tests or treatment.
- Difficulty swallowing medications, especially pills. Healthcare providers can suggest different ways of giving essential medications, for example in liquid form, as a nasal spray, with topical patches, suppositories, or by injection. This is a good time to review medications with your parent’s healthcare team: they may recommend discontinuing medications — for example those to control cholesterol or high blood pressure — that manage long-term healthcare risks.
- Confusion, agitation, paranoia or “visions.” These can be quite or scary upsetting to family at the bedside. It can help not to contradict a confused person, or tell them that what they’re seeing isn’t there, especially if the situation doesn’t harm them. If the experiences are frightening or threatening, then get help from your parent’s healthcare team.
When death is expected within hours or days, the person is often unconscious. Even so, it can be comforting to talk with them, to let them know that you love them and to say anything else important to you.
People at the bedside might notice these changes, all of which are normal and do not cause suffering:
- The person’s hands and feet may feel cool to the touch
- The skin of the fingers and toes may begin to darken and look purple and mottled as circulation slows. The skin of the face may also develop a bluish or purplish colour.
- The heart tends to beat more quickly but not as strongly, which can make the pulse rapid or hard to feel.
- Breathing may become irregular. The person may take shallow, rapid breaths. There may be increasingly long pauses between breaths.
- Breathing may also become noisy, as secretions build up in the lungs and cause rattling or gurgling. Although this is sometimes upsetting for people at the bedside, it’s not distressing to the unconscious dying person.
When death has occurred,
- The person’s breathing will have stopped and there will be no movement.
- The muscles of the face will relax.
- The visible pulse in the neck or wrist will have stopped, and you will not be able to feel a heartbeat.
- The person’s eyes may or may not close. Eyes will often remain half-open. It’s okay to close them. The pupils become quite large and do not change in size in response to light
- The body will cool to the touch, usually over a few hours.
Remember, death isn’t an emergency: It’s okay to touch the dead person, to wait for family and close friends to arrive to say goodbye, and to take a little while to just be together. When you’re ready, a member of the palliative care team can walk you through the next steps of this journey.
For more information and further reading, have a look at these Canadian resources on palliative and hospice care:
- Canadian Virtual Hospice: information and support on advanced illness, palliative care and grief
- A Caregiver’s Guide: A Handbook about End-of-Life Care, by the Canadian Hospice and Palliative Care Association (CHPCA)
Let CareEasy help you help your loved ones at the end of life
As you support a parent or loved one through the process of dying, the CareEasy app can help you navigate this highly emotional time. CareEasy is an easy-to-use mobile application that lets you connect with siblings, family members, professionals and anyone else involved in your loved one’s Circle of Care. During the end-of-life process, CareEasy helps you share information, track tasks and expenses, and coordinate care. Our goal is to streamline your tasks so that you can focus on what’s important: spending quality time with the person you love.