Patients with life-limiting illnesses may look towards palliative care to make themselves, and their family members, more comfortable in the later stages of their life. If you’re planning to arrange palliative care for yourself or your loved ones in Ontario, this guide will help you gather the information you need.
- What is Palliative Care?
- How to Know When Someone is Ready for Palliative Care
- Palliative Care Options in Ontario
i) Palliative Care in Hospitals
ii) Palliative Care in Residential Hospices
iii) Palliative Care in Long-Term Care Homes
iv) Palliative Care Provided at Home
– Palliative Care Provided by Family Caregivers
– Palliative Care Provided by Home Care Agencies
- Cost of Palliative Care in Ontario
- Additional Resources for Palliative Care in Ontario
- Caregivers: Remember to Take Care of Yourself
What is Palliative Care?
Palliative care is often thought of as the care provided to those living with life-limiting illness. However, palliative care is also important to support the family members of patients.
According to the World Health Organization (WHO), palliative care is:
“…an approach that improves the quality of life of persons and their families facing the problems associated with life-limiting illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
In other words, palliative care supports patients and their families by providing:
- Help to relieve suffering through:
i) Pain management
ii) Symptom management—for symptoms such as nausea, anxiety, depression, difficulty breathing, etc.
- Improvements to quality of life
- Psychological, social, emotional, spiritual, and practical support
- Support for family caregivers during the illness and after the death of the person they’re caring for
Palliative care can be provided early in the course of illness, together with other treatment plans or therapies. Palliative care can be offered in a range of settings and is generally provided to patients by a team of health care professionals to offer patients support holistically. These health care team members can include doctors, nurses, pharmacists, social workers, therapists, spiritual counsellors, and more.
Palliative care should also be differentiated from end-of-life care. While end-of-life care often focuses on the last months or years of the patient’s life when the illness is life-threatening, palliative care can be offered at any time from diagnosis to bereavement, as shown in the diagram below.
Data from a 2016 report by Health Quality Ontario stated that among the patients that received palliative care, about half (47.9%) began receiving palliative care in the last month of their life. This means that not enough people understand the nature of palliative care, as palliative care can be provided as early as the time of diagnosis.
How to Know When Someone is Ready for Palliative Care
Typically, patients of chronic progressive diseases, such as cancer, congestive heart failure, chronic obstructive pulmonary disease, and HIV/AIDS, can choose to have palliative care to help relieve physical, psychological, emotional or spiritual suffering caused by these illnesses.
Receiving palliative care doesn’t mean that the person only has days or months left to live—in fact, palliative care can start as early as the time of diagnosis of the illness and isn’t limited to terminal diseases. Palliative care is meant to enhance patients’ comfort and quality of life during their treatment and is used separately though in combination with their therapy treatment plan.
To determine if someone is ready for palliative care, the patient may need to consult with their healthcare team and family members. As palliative care is often provided alongside other treatment plans, it’s important to know what the current treatment entails and then determine how palliative care fits within this process.
Several questions may come to mind when considering palliative care as a care option:
- What does the person living with the illness want?
After reviewing the treatment plan with the primary healthcare provider, a patient may have their own preferences for whether or not they want to receive palliative care, and to what extent. The timing of palliative care depends on the patient’s wishes in this case.
- What options are available for palliative care?
Palliative care can be accessed in different settings and by different providers, such as in hospitals, hospices, long-term care homes, by family caregivers, or through home care organizations. Admission criteria may differ for each of these settings / service providers, and the patient may qualify for different palliative care options depending on their health condition and their wishes.
- What is the nature of the illness?
The starting point of palliative care as well as the type of palliative care provided can differ depending on the nature of the illness. An incurable cancer, for example, may have a clear progressive path and will be easy to determine when palliative care support will be beneficial. On the other hand, if the patient has medical problems without a terminal diagnosis, palliative care can be integrated into the overall treatment plan to provide comfort and support as needed.
Palliative Care Options in Ontario
Patients who wish to receive palliative care can decide between receiving care in hospitals, hospices, long-term care homes, or at home.
Palliative Care in Hospitals
Although a large number of people would like to spend their last moments at home, sometimes this is not always feasible. If a patient needs to remain in the hospital for certain interventions and procedures, then they will need to receive palliative care in that hospital setting.
Some hospitals have a small number of specifically designated beds for palliative care patients, but most patients are admitted to the hospital’s regular acute care beds. Many hospitals also have palliative care consultation teams for patients, as well as other patient and caregiver programs and supports.
Palliative Care in Residential Hospices
A residential hospice is a caregiving facility that provides a home-like environment for patients who are often at the very last stages of their life. According to Hospice Palliative Care of Ontario, community residential hospices provide palliative care services by a team of interdisciplinary healthcare service providers with specific palliative care expertise. Residential hospices provide support 24 hours a day, 7 days a week, at no cost to the patient. Hospices may also offer support for their family members.
Someone may enter a hospice when care can’t be provided at home or when other options have been ruled out. Medical assistance is provided in residential hospices though it will be to a lesser extent than in a hospital setting.
Admission criteria also vary among hospices, so it’s best that you contact the hospice to know exactly what is needed for admission. Generally speaking, in order to be admitted to a hospice, you will need to at least qualify for Ontario Health Insurance Program (OHIP) and have a referral from your Local Health Integration Network (LHIN). Some hospices also require medication lists, detailed medical documents or doctor-to-doctor referrals.
Palliative Care in Long-Term Care Homes
A long-term care home, sometimes called a nursing home, is a place where people can live and receive help with their daily activities, such as eating or bathing. Long-term care homes are best suited for people who have difficulty directing their own care since they provide 24-hour nursing and personal support, which can include palliative care.
Long-term care homes provide palliative care to the residents of the home unless they require intensive or complicated medical assistance. In this case, the resident would likely receive their care in a hospital setting.
There are certain admission criteria that you should pay attention to if you wish to be admitted to an Ontario long-term care home. If you or your loved ones are qualified and would like to arrange care in an Ontario long-term care home, make sure you follow these steps. While the Ontario government covers the costs of nursing and personal care—which can include palliative care—you’ll need to pay for accommodation charges in a long-term care home.
Palliative Care Provided at Home
Remaining in the comfort of your own home is often the most desirable setting, especially for patients in the later stages of their life. Palliative care can be provided in a home-based setting by family caregivers, through a home care agency, or some combination of both.
Home-based palliative care is most suitable for those who do not require the intensive and complicated medical assistance that can only be received from a hospital. It is possible for some medical assistance to be provided at home if adaptations can be made to accommodate any necessary medical equipment.
Some questions to ask when considering palliative care at home include:
- Does the family have the resources to support a home death?
- Are the family caregivers able to take time off from their regular work?
- Are the family caregivers eligible to receive caregiver benefits?
- Are the caregivers able to assist with tasks like feeding and bathing?
- Is there enough room in the home for medical equipment that would help in providing care?
- Is the family comfortable with health care providers coming into the home to help with caregiving? Home care workers, palliative care nurses or doctors may be some of the people who visit the home.
For more detailed information regarding what needs to be considered when providing palliative care at home, read Considerations for a Home Death.
Palliative Care Provided by Family Caregivers
Family members often act as caregivers for their loved ones, providing palliative care to relieve pain and provide support. If this is the case, it’s important to make sure that the patient supports the idea of receiving palliative care at home, and that more than one family caregiver is available to provide support. It’s also important to ensure that skilled medical support is available at any hour of the day should it be needed.
Palliative Care Provided by Home Care Agencies
Palliative care provided by a home care agency can be publicly funded, or can be paid for privately in the form of specific home care services.
In order to qualify for publicly funded palliative care, the patient needs to have a referral from their Local Health Integration Network (LHIN). In order to do this, the patient will need to contact their LHIN to see if they qualify to receive publicly funded palliative care at home. The LHIN will assess the patient’s condition, and determine the specific type of care as well as the amount of care that the patient needs. For example, if the patient or family caregivers need help providing care, the LHIN can assign a home care agency to their case. The home care agency will then likely send a Personal Support Worker or Home Support Worker to provide extra support.
If you have any questions about the process for receiving publicly funded palliative care, you should contact your local LHIN directly.
If you don’t qualify for publicly funded palliative care or would like to receive additional support services on top of the current care plan, you can ask for specific private home care services. Make sure you discuss with your family doctor and/or the LHIN before making the decision to have private home care. Some services may require a referral from the LHIN or from your family doctor, such as therapy.
You will also want to make sure that you choose a home care agency that is right for you. At Closing the Gap Healthcare, we have an Interdisciplinary Palliative Care (IPC) team, consisting of personal support workers, social workers, nurses, physiotherapists, occupational therapists, speech-language pathologists, and registered dietitians. The IPC program uses a holistic approach to improve the comfort and quality of life by providing palliative care for patients in the comfort of their own home.
Cost of Palliative Care in Ontario
Palliative care is completely publicly funded in Ontario. This means that as long as you qualify for OHIP and qualify to be admitted into a hospital, a hospice, or a long-term care home, you won’t need to pay for palliative care services provided in these settings. Home palliative care is also publicly funded by the LHINs. If you would like to receive palliative care at home, contact your Local Health Integration Network and the LHIN will first determine if you qualify for public funding; if you do, they will then assign the specific type of care and the amount of care you need to your care plan.
If you or your loved ones don’t qualify for OHIP nor home care, or would like to receive additional support services such as home support or nursing in addition to the current palliative care plan, you can consider private home care services provided by home care agencies. If you pay privately, the costs of the services will differ depending on the type of services you would like to receive. For example, personal support costs around $28 to $35 per hour, while the hourly cost for nursing could be from $45 to $80 depending on whether you want to receive care from a Registered Practical Nurse (RPN) or Registered Nurse (RN).
Once you’ve decided you want private home care added to your plan, you can contact a home care agency and let one of the care representatives know the type of service and number of hours that you are looking for.
Additional Resources for Palliative Care in Ontario
If you’re a caregiver and you’re supporting a family member receiving palliative care, here’s a list of useful resources:
- Making Decisions About Your Care
- New Revised HCC ACP Workbook
The workbook is provided by Speak Up Ontario, a partnership between Hospice Palliative Care Ontario (HPCO) and the Canadian Hospice Palliative Care Association (CHPCA). The 2018 version of the Ontario workbook is intended for anyone, regardless of age, that is ready to start advance care planning conversations.
- Support & Self Care for Caregivers
Caring for another person can be rewarding and very challenging. It requires time, and often, significant physical and emotional energy. But as a caregiver, your health and well-being is still a priority. Champlain Hospice Palliative Care Program provides simple physical, psychological, and spiritual self-care strategies for caregivers.
- Grief & Bereavement Support
There are different types of support available to assist with grief and bereavement. Champlain provides self-education and grief resources (via Virtual Hospice), local peer support groups, and specialist bereavement services.
- Canadian Virtual Hospice
Canadian Virtual Hospice is a network that provides information and support on palliative and end-of-life care, loss and grief. It has a collection of articles for client and family education. The topics that they cover include palliative care, emotional health, spiritual health, symptoms & health concerns, communication, decisions, financial assistance, and more.
Caregivers: Remember to Take Care of Yourself
Acting as a family caregiver can be difficult physically and emotionally. It’s completely alright if you feel burnt out at times—please remember that palliative care is not just for patients, but it’s also for family caregivers as well.
Whether or not you are acting as a caregiver for your loved one, hopefully this guide has helped you understand more about palliative care.