Palliative and End Of Life Care
Introduction
NOTE: While acknowledging that many cultures and belief communities do not look at physical death as the end of life, throughout these pages we will be using the phrase “end-of-life” to refer to the period leading up to and including the end of the individual’s current existence brought about by the death of the body and its systems.
When we hear someone whisper, “He’s palliative now”, the speaker usually intends to convey that the patient has only hours or days to live. This mistaken belief that palliative care is only for end-of-life can be one of the greatest barriers to accessing palliative care services in Nova Scotia.
Palliative care is a method of patient and family-centered care that focuses on comfort, dignity, and quality of life when a life-limiting illness is present. Palliative care can last hours or days—or years. A palliative approach to care can be delivered anywhere: in the doctor’s office or hospital, at home, in a clinic, or long-term care facility. It can be delivered by physicians, nurses, social workers, home care workers, paramedics, volunteers, or family and friend caregivers. It can also be delivered by a Palliative Specialist Team.
As defined by the World Health Organization, palliative care “affirms life and regards dying as a normal process, neither hastening or postponing death.”
The information provided below is intended to help you, the caregiver:
- anticipate, to whatever extent possible, what you might expect as your care recipient’s condition progresses;
- know how to identify needs and where to find help and supports; and,
- have a sense of control even though you are in an uncontrollable situation.
Many caregivers commit to being by their care recipient’s side throughout the palliative and end-of-life experience. They may, however, be fearful because they do not know what to expect from the dying process. In her article “5 Myths About Dying”, Dr. Marilyn Mendoza says that “not having the correct information can intensify our fears”. Being prepared, having answers to your questions, and feeling supported can turn a potentially frightening and lonely life event into a time to come together in love, compassion, and healing.
Caregivers Nova Scotia hopes this website module will dispel fears by giving access to relevant information and by providing support on palliative care and end-of-life caregiving. Through the coming months, we will be adding to this section of our website in an effort to help prepare you for the task ahead.
What is a good death?
A good death means different things to different people. Some want to go with their boots on, active and participating in life. Some want to die at a time and place of their choosing. Others want to fight their illness until the very last minute. And some want peace and to be alone.
As death approaches, some dying individuals may want loved ones near, feeling their presence, and hearing their gentle, kind words. Others will prefer solitude.
“I believe that in the darkness there will be beauty and there will be love; and every now and then it will feel like more than enough.”
-- Dr. Kate Bowler, author and theologian
Despite our differences, there are some commonly held characteristics of a good death.
- being free of pain and discomfort
- being treated with dignity and kindness
- having our wishes honoured
- being free of suffering, whether through practicing our beliefs, having mended a relationship, being able to say goodbye, or a sense of a life well live
- feeling confidence in those caring for us
Before committing to walking with someone through their living and dying journey, it may help to address your own feelings about death and to realize how you may respond. All of your experiences with death and dying may have an impact on how you approach this journey as a caregiver.
Think of a time when you were in the presence of a person who was dying. Then consider how you felt. Were you:
- nervous that you didn’t know what to expect?
- peaceful and accepting?
- frightened that something awful would happen while you were present?
- sad to know this person will soon die?
- honoured to be present for such an important time in the person’s life?
- awkward and embarrassed that you didn’t know what to say?
Was the person who was dying suffering or were they at peace? Did you think about what they may be feeling? Did you imagine how you would feel if you were in their shoes?
We hope these pages will give you the information you need to give care through your loved one’s death. Please contact us at 1.877.488.7390 or Info@CaregiversNS.org if we may be of assistance.
Palliative and End-of-Life Care topics have been divided into the following and are available by clicking below or on the sub-menus to the right
- About You
- Communication During Chronic Illness and End-of-Life
- Getting Prepared
- Palliative Care
- Living and Dying at Home
- Living and Dying Away from Home
- When Death is Near
- The Moment of Death
- After Death Has Occurred
- Funerals and Burials
- Other Important Considerations
- Grief and Bereavement
Caregiver Tips
This 12-minute TEDx Talk video Don't Take Death Lying Down by Jim McDermott shares clear and memorable stories and reasons encouraging people to think and act on our own convictions while we can. Start today!
In this episode of CBC’s Now or Never, people are finding ways to make peace with death.
- A woman sends her partner of 22 years off "in style" by building her a handmade casket.
- A daughter finds the courage to have a frank conversation about death with her aging parents.
- Strangers gather at a bookstore for a Death Cafe — and share why preparing for death can be more complicated for the LGBT community.
- A Mexican-Canadian man finds comfort in his culture following the death of his father by suicide.
- A bereavement counsellor helps seniors unleash the power of their own life stories.
- Typing out her friend's obituary helped one woman find beauty in life and death.