Frequently Asked Questions from Clients or Their Caregivers when Receiving Palliative Care
Palliative care is an approach to caring for people affected by progressive, life-limiting illness. It focuses on helping the patient live as full a life as possible and on providing relief to physical, emotional and spiritual suffering. It helps patients pursue meaningful experiences and personal and spiritual growth. It also considers the patient’s family as part of the care unit and strives to address all illness-related issues and needs while preventing new issues from arising. Bereavement support for family members is also often a part of palliative care.
Palliative care is often a shared journey for patients, their families and the care team and open communication is very important. Each patient and family is different so sharing your questions, concerns and needs with your health care team is very important. Your team will provide information on technical and medical issues, help you to develop a home care plan, provide or suggest resources, and connect you to other support networks in your community.
Many Canadians say they would prefer to live out their last days in the comfort and familiarity of their home but supporting this process at home can be complex. Some things you need to consider are:
- Do both the client and the family support the idea of death at home?
- Do you or your loved one have enough family or friend caregivers to manage the supports at home?
- Is skilled medical support available in your region 24 hours a day?
- Is the home equipped or able to be equipped to accommodate physical changes (e.g. wheelchair access, a bedroom on the main floor, room for medical equipment)?
- Do you or your family have the resources to facilitate a home death (e.g. changes to the house, extended time off work)?
- Is the family comfortable with health care providers, such as nurses, home care workers, and doctors, regularly coming into the home to help with caregiving?
Consider that circumstances can change and recognize that sometimes the patient can eventually have needs that can no longer be met at home despite best efforts.
Even though death is a natural part of life, many of us avoid talking about it, especially to children because we want to shield them from pain. But children of every age benefit from being prepared in advance for the death of someone close to them. Talking to kids about death early gives them time to process what’s happening, to say goodbye and helps them develop a healthy attitude toward death. Speak about the situation honestly in an age-appropriate way and tell them the types of things that will happen in the future. This avoids leaving children to imagine inaccurate explanations. Let them know that their emotions and those of others around them are healthy and natural. If possible, provide extra support through school counsellors and grief programs. Here are some more tips about talking to children about death.
Caregiving can be mentally, physically and emotionally demanding. It is often hard to take time for yourself when caring for another person, but not doing so puts you at risk of burnout, irritability and illness. VHA’s Palliative Caregiver Articles offer suggestions on self-care while looking after an ill loved one.
While it is best to speak to your medical professional for details about care journeys, options include:
- Palliative care at home: Many people would prefer to die in the comfort of their home. In Ontario, this is possible with palliative care support teams of nurses, home care workers, doctors and family/friends. Together with the patient, these teams work within the patient’s home to relieve suffering and improve quality of life and death.
- Palliative care in hospice: Sometimes a person can’t receive care in the home until their death. Hospice care provides palliative services within a medical residence. Any individual and/or family living with, or at risk of developing a life-limiting illness, regardless of their age can receive hospice care.
- Medical Assistance in Dying (MAiD): In June 2017, it became legal in Canada for doctors and nurse practitioners to provide patients with medical assistance in dying. This means that these medical professionals can administer a substance—or provide a substance for the patient to self-administer—that causes the patient’s death. Certain age and physical/mental health requirements must be met to be eligible. Visit the government of Ontario website for more information on medical assistance in dying.
Advance care planning is the process of thinking through and sharing your health and care wishes in case you become too ill and unable to communicate later. It involves having discussions with family and friends, designating someone to make decisions for you when you can’t speak for yourself, writing down wishes, and talking with health care providers and financial or legal professionals. This video from the Speak Up Campaign for Advanced Care Planning is a good place to start.
In Ontario, Home and Community Care Support Services (HCCSS - formerly LHIN) arrange all government-funded health care services for people living at home. HCCSS is responsible for deciding who receives care, the level of care needed and for how long. Call 310-2222 to contact your region’s HCCSS and find out what is available for your specific situation. Your palliative home care is likely to include home visits by physicians, nursing staff, personal support workers, hospice volunteers, as well as support from your family and friends. Certain equipment and supplies may be provided through your HCCSS if you are eligible.
In many cases, families pay for additional private home care support. Some of these services may be covered by private health insurance policies so check with your insurance provider to determine coverage (if applicable).
For those on a limited income, additional funding options for services and equipment may be available through government and charitable programs to eligible applicants.