Palliative Care
“At some time, in some way, we must all face the end of life. And most of us share a common hope - that when death comes to us or to a loved one, it will be peaceful and free of pain. We hope to face death surrounded by those we love, feeling safe, comfortable and cared for.”
-- Living Lessons - A Guide for Caregivers
The following section contains information about:
- What is the difference between hospice and palliative care?
- What is palliative care?
- Definitions
- Misconceptions about palliative care
- Palliative care in Nova Scotia
- Who needs palliative care and when should it begin?
- What are the benefits of palliative care?
- What do hospice societies and palliative care societies do?
1. What is the difference between hospice and palliative care?
Caregivers Nova Scotia staff are often asked this question. The Vanier Institute's Death, Dying and Canadian Families, explains the background behind these two terms.
St. Christopher’s House, the first modern hospice, was founded in London by Dr. Cicely Saunders in 1967. In her book Living with Dying: The Management of Terminal Disease, she argued that patients have the right to expect the same focused attention at the end of their lives as they received when they were originally diagnosed. “The aim is no longer a cure, but the chance of living to his fullest potential in physical ease and activity with the assurance of personal relationships until he dies.”
The hospice movement spread to Canada when surgical oncologist Dr. Balfour Mount, Inspired by the work of Dr. Saunders, began to examine the needs of dying patients at the Royal Victoria Hospital in Montreal. As a result of his study, “a hospice-like ward [was established] within the hospital to relieve suffering and provide quality end-of-life care.” It was Dr. Mount who coined the term “palliative care”, replacing the word hospice which had negative connotations in Quebec. The pilot project also featured “a consultation team to work with other hospital wards, a home-care outreach service, and bereavement follow-up program.”
Although the phrase hospice care is often used mainly in UK and USA, palliative care is more often used in Canada. Both indicate the same type of holistic care focusing on quality of life and symptom control.
2. What is palliative care?
Palliative care is a method of patient and family-centered care that focuses on comfort, dignity, and quality of life as long as a life-limiting illness is present. Palliative care can last hours, days, or even years. You can receive palliative care whether you are an adult or a child, even if you are receiving treatment that may cure your illness. We recommend the article 5 Things You Should Know About Palliative Care.
3. Definitions
Below are a few other definitions that may clarify what palliative care is, who provides it, and where it can take place.
The palliative approach to care can be delivered anywhere: in the doctor’s office, the hospital, at home, in a clinic, or long-term care facility by a team of physicians, nurses, social workers, home care workers, paramedics, volunteers, and family and friend caregivers. A palliative approach to care is not giving up; it is changing the focus to quality-of-life until the time of death. It includes not only physical care but also mental, emotional, and spiritual care.
Palliative Specialist Teams are made up of healthcare providers from a variety of disciplines - social workers, nurse practitioners, physicians, palliative consult nurses, clergy, respiratory therapists, and physiotherapists. This list may be expanded or shortened depending upon needs related to the medical condition. Palliative Specialist Teams provide care and guidance to both the patient and the family. Their services may be available as needed when significant changes are happening.
Some hospitals are fortunate to have a dedicated Palliative Care Unit. Staff who have had specialized training provide a more home-like experience where the emphasis may not be on s\medical care so much as comfort, dignity, and being in the company of those who are important to you.
4. Misconceptions about Palliative Care
The following misconceptions about palliative care can be a barrier to receiving the services that could result in a better quality-of-life and a better quality-of-death.
- Palliative care is just for people who will die soon
- Palliative care is just for cancer patients
- Palliative care will shorten life
- Palliative care only takes place on a special unit in the hospital
- Palliative care means there is no hope
Contrary to such mistaken beliefs, the Nova Scotia Health Authority website states that “Palliative care enhances the quality of life of people with a life-limiting illness. It does this by preventing and relieving suffering. In addition to helping the patient, palliative care helps a family cope during a family member’s illness and death, and during the grief process.”
5. Palliative Care in Nova Scotia
Although currently no standardized palliative program covers the entire province, you and the person diagnosed with a life limiting illness have the right to request a palliative approach to their healthcare and end-of-life care. Services vary, and location in the province will determine the level of Palliative Home Care available from Continuing Care. The Nova Scotia Health Authority has information on Palliative Care Services that residents of Nova Scotia may expect to receive, where to access this important service, and contact information.
Hospice Halifax is a 10-bed hospice residence that opened to the public in 2019. It accepts patients from all across the province. There is no fee for services, and you can apply directly from their website.
6. Who needs palliative care and when should it begin?
Other than those who die suddenly and unexpectedly, we could all potentially benefit from palliative care. Although your loved one may not initially be served by a Palliative Specialist Team, they should receive a palliative approach to care from the time of diagnosis. This approach keeps quality-of-life in mind, even though medical treatment may be the current focus. It is particularly appropriate for anyone whose pain or other symptoms are not under control.
According to the Canadian Virtual Hospice article How do you know when someone is ready for palliative care?:
“In early stages, palliative measures such as pain control may be only a small part of overall care. As the illness progresses, some previously reversible problems become irreversible, or the burden of treatment outweighs its benefits. Then the focus of care turns increasingly toward comfort. For example, someone with lung disease may have had pneumonia previously, and had treatment in hospital to overcome the infection itself. With a palliative approach, symptoms such as shortness of breath are treated, while treatment for the pneumonia itself may or may not be given. The change of focus can come from the patient, or it can be determined by the illness. In such situations, it’s best to integrate palliative care into overall health care, rather than to choose a specific starting point.”
Although everyone has a right to receive palliative services, the reality is that in some areas there is a waitlist for palliative specialist services.
The Canadian Hospice Palliative Care Association has this helpful guide for caregivers: "Comfort Care at the End of Life for Persons with Alzheimer’s Disease or other Degenerative Diseases of the Brain." This guide provides information about the trajectory of the disease, possible complications, and options to manage issues such as feeding difficulties, pneumonia, symptom management and comfort care, the decision-making process, the dying process, and grief.
7. What are the benefits of palliative care?
According to a National Institute of Nursing Research publication, palliative care strives to provide you with:
- Expert treatment of pain and other symptoms so you can get the best relief possible
- Open discussion about treatment choices, including treatment for your disease and management of your symptoms
- Coordination of your care with all of your health care providers
- Emotional support for you and your family
Researchers have studied the positive effects palliative care has on patients. Recent studies show that patients who receive palliative care report improvement in:
- Pain and other distressing symptoms, such as nausea or shortness of breath
- Communication with their doctors and family members
- Emotional support
Other studies also show that palliative care ensures that care is more in line with patients’ wishes and that it meets the emotional and spiritual needs of patients.
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8. What do hospice societies and palliative care societies do?
There are several hospice societies and palliative care societies throughout the province with varying mandates. Some exist to raise funds to build a hospice residence in their community. Others focus on palliative care support in patients’ homes or at hospitals provided by social workers or volunteers. Please contact your local hospital for contact information for the closest society to your location. Hospice Societies in Nova Scotia.
Canadian Virtual Hospice has a section of their website for the 2SLGBTQ+ community to access information regarding palliative care that is inclusive and respectful.
Caregiver Tips
Many caregivers want to be by their loved one’s side throughout the palliative experience but are fearful because they do not know what to expect when someone is dying. They are also often afraid to ask, worried they may be seen as having changed their mind or as ‘given up’. Two great resources to aid your learning are Preparing for Death and Dying and the Canadian Virtual Hospice website.
Please contact our Caregiver Support Coordinators if you would like to discuss palliative caregiving or if there are further resources we might be able to help you find.