Let’s talk about myths.

There are countless misconceptions about what hospice palliative care is and how it works. Below are common myths that persist today.

MYTH: I can only get palliative care in hospital

FACT: Palliative care services are offered in many places, including hospitals, hospices and in your own home.

MYTH: Palliative care manages pain through the use of addictive narcotics.

FACT: Palliative care is whole person care that provides psychosocial and spiritual care along with pain and symptom management.

MYTH: Having hospice and palliative care means you will die soon.

FACT: Hospice and palliative care is not just for the end of life. It is a holistic approach that includes care-giver support, spiritual care, bereavement and much more.

MYTH: Hospice and palliative care is just for people with cancer.

FACT: All those who are diagnosed with a chronic life-limiting illness can benefit from hospice and palliative care.

MYTH: Hospices are generally just for old people.

FACT: Hospice and palliative care is provided to people of all ages – from infancy to adulthood.

MYTH: Everyone has access to hospice and palliative care.

FACT: Though every person has the right to hospice and palliative care, there are many around the world who do not have access to hospice and palliative care.

Source: Achieving Universal Coverage of Palliative Care: Dispelling the myths October 12, 2013

For more information on myths, check out Five Common Myths about Hospice Care.

Through the Eyes of a Son

~ Hospice Georgina ~

When you live in England and receive a call saying your mother in Canada is facing cancer surgery and chemotherapy, it’s a crisis.

Recently Harry had such a call and although he came to Georgina to be with his mother, it was clear that a two week trip wasn’t going to be enough. Luckily, Harry called Hospice Georgina to see what could be done to help his mother. Our experienced staff met with the whole family, including Harry’s sister, Candace, who lives and works nearby. The question that pressed everyone was how can we get through this crisis in the best way?

Hospice staff were able to name a number of agencies that could help and described the services each offers. Harry and Candace listed what they and their mother needed. Soon they were able to put together a plan and Hospice made the necessary referrals to other agencies. Some friends and neighbours had expressed concern but didn’t know what to do. They also became part of the team to cover some of the hours when Mrs. H. would be alone. Hospice matched a volunteer to the client and together they made up a support team to care for Mrs. H.

Struggling with cancer is never an easy experience but Mrs. H. had a support team that would help her, whatever the outcome. Harry would hear from his mom every other day about what was happening and the team would bring caring and reassurance to Mrs. H.

While outsiders sometimes think of this kind of work as depressing, there is a sense of doing something worthwhile that is inspiring at many levels. Those who help develop a sense of satisfaction and confidence in their skills.

Mrs. H. has had the surgery and has begun treatment, Hospice will journey with her to help her have the best quality of life that is possible. We work with each person at a time, in a way that reflects their needs.

It is how every one of us would like to be treated in life’s crises.

– Testimonial by Harry, Hospice Georgina

Through my Eyes

I came here thinking that I was giving, but I ended up receiving.

For three years I have been serving in the hospice world. I wasn’t sure where life would take me next but I was compelled to give back. My time, my support and my experiences. Most of us all have experienced loss, whether we were impacted directly or know someone who has lost someone, it is inevitable. I’ve experienced loss directly and it compelled me to volunteer at my local hospice.

There is a large misconception that hospices are extremely sad. In truth, there is far more joy and peace in a hospice than I have experienced anywhere else. I guess when your reality changes and your days become numbered you realize how important it is to value and cherish every moment left. I think we should all face life with that perspective. That every second it bares, holds value and although we don’t know what lays ahead for our lives we do know that it can be taken from us whenever it decides.

I started volunteering in a bereavement group for children at my local hospice. Yes, a hospice serves all ages, even those who are not at their end of life. Grief and death are sisters and it affects not only the individual but those around them. Some children lost a parent, some lost a sibling but in each case there was pain behind their story. Each child responded differently to the activities I led and group discussions took a lot of time for the children to feel comfortable to share. By the end of sessions, those children taught me that death can appear at any age and we will all be affected to some extent but it doesn’t mean that we can not look back at our memories and smile at the good times. I thought I was giving to these children, but I ended up receiving so much love and wisdom from them.

Through the Eyes of a Caregiver

Being a caregiver isn’t easy – but you don’t truly understand how difficult it is until you’ve experienced it firsthand.

When you’re 19 and the youngest sibling of four, nothing can really prepare you for when you find out that your mother has been diagnosed with terminal cancer. Transitioning from the role of care receiver as a daughter, to a care giver for my mother was a challenging and difficult experience. Especially since my family had very little knowledge of what hospice palliative care meant, or that it even existed.

The summer during my mother’s illness was a great learning curve for my family as we had to learn what it meant to be a caregiver, but also execute those lessons at the same time, while understanding and having to accept what was happening to my mother. We were very fortunate to receive massive amounts of support from family and friends when needed, such as cooked food, emotional and social support, as well as respite care. Although my mother spent weeks at a time in the hospital during her final months, we were lucky enough to have her spend tons of time at home as well when her condition would be stable enough to allow it. She did eventually pass away at the hospital, but she was surrounded by at least 40 close family members – we will always treasure those final moments with her and having the opportunity to be by her side during her final breaths.

I had not been so well versed in hospice palliative care during my mother’s diagnosis and end of life journey, but after she had passed, I began to volunteer with a local hospice. I spent time helping with their children’s program to support children who were in the grieving/bereavement process. I was also an in-home volunteer and would be assigned to an individual who was in their palliative care journey and had less than a year to live. I would visit them in their home for 4 hours every week to provide social, emotional, mental and spiritual support, as well as respite care for their primary caregiver(s). Although this is a very difficult volunteer position to take on, I was very passionate about it. As I mentioned earlier, my family was blessed enough to have tons of family and friends readily available and accessible to help us during our tough time, but I recognize that not everyone is lucky enough to have that much support. I highly encourage individuals who are caregivers to reach out for support and ask for help when needed as you never know what kind of resources are out there.

HPCO has created a set of caregiver support modules that are very informative and easy to read to help support. These educational modules are designed to further strengthen the capacity of informal caregivers who help their family member or friend remain at home at end-of-life. There are up to 19 topics available ranging from physical care, to social and emotional care, spiritual care, managing conflict, navigating family dynamics, etc. Each module is available in both English and French, and there is a First Nations Caregiver Portal.  

Visit http://www.caregiversupport.hpco.ca/ to access our Caregiver Support Portal.

Through the Eyes of a Husband

~ Hospice Vaughan Testimonial ~

Tammy and I fell in love while writing songs for a three-song demo she was recording at a friend’s studio. It didn’t take long to know my life was going to be blessed with her by my side.

Most people aren’t fortunate enough to find their true love, and I find that extremely sad.  Others are genuinely blessed in that love has indeed touched their lives.  I am one of the fortunate and my story begins with that very fact.  Tammy was, is and always will be the love of my life…my true soul mate. 

During our three-year relationship, we focused on our love of music but more importantly on “us.” We were completely fulfilled, simply by being in each other’s presence, and were married July 12th, 2003.  At our wedding reception, I arranged to have the piano rolled out on to the dance floor so that Tammy and I could sing “our song.” We wrote the song together; Tammy sang her verse and I sang mine.  We sang the chorus together.  We spent four glorious months as husband and wife, but the happiness I had found was to be short-lived.  My heart and spirit were broken on a cold November day when she was taken from me in a tragic car accident.  This beautiful, vibrant, loving woman was gone. 

The days that followed were spent in shock and confusion.  I was offered counseling by a crisis response centre, but was not yet ready to accept their help.  I was feeling extremely vulnerable and didn’t want to share that with anyone.  I learned about Hospice through a family friend who is a volunteer there.  Because of the trust I have in this friend, it re-assured me that this was the counseling I needed, and that brought me comfort.  In fact, my parents had attended several fundraising events for Hospice Vaughan in the past; not knowing that one day I, myself would need their services.  I called the number that was given to me and made an appointment to see a grief counselor at Hospice Vaughan.  My experience at Hospice is difficult to put into words.  After my first session, I realized that it was very necessary and important for me to continue coming.  It allowed me to speak about everything I was feeling…the good, the bad, and the uncomfortable.  I felt safe in their care and all who volunteer and work there provided the same comfort.

The grief counselor asked me if I would be interested in joining a grief support group.  I felt open to sharing my pain as well as experiencing other people’s pain, so I agreed.  The program gave me a great sense of acceptance and understanding.  It was made up of other people who had suffered loss as well.   We all connected and shared our feelings and experiences.  Every session was an experience of both laughter and sorrow.  We shared our innermost feelings while comforting one another.   Hospice Vaughan is here for people who have lost a loved one.  The services are available free of charge.  It continues to be a constant source of support for me….even to this day. 

I have some advice for those of you reading this article:  Please don’t take your lives for granted.  Death does not discriminate.  It can take anyone at anytime.  Tammy and I loved and lived passionately during our time together.  I know we will never really be apart.  This is what keeps me with her and her with me.  Every time I sit at the piano and sing our wedding song, I sing my verse…and she sings her verse from heaven.  I love her too much to just trick myself into believing I have to let her go.   She will always be a part of me.

   – Written by: Adrien, Hospice Vaughan

Through the Eyes of a Hospice Volunteer

~ Huron Hospice Testimonial ~

It is difficult to understand what it feels like when parents lose a child.

This little boy started life out like any other child and everything seemed perfect, however, his days were numbered. The parents began to notice physical difficulties that Ben was having and specific milestones that he did not seem to be meeting.  Ben’s parents became concerned and after much testing and lengthy waiting periods the final diagnosis was Battens Disease.

Battens Disease is a rare progressive degenerative disease which causes blindness, seizures, loss of motor skills and is always fatal. Not only did his parents know their child would die but they were watching his death happen in stages before their eyes.  There were a lot of community support services involved but when Huron Hospice services were offered the parents were forever changed.

As the volunteer coordinator I first visited with Ben’s mom when Ben was 3 years old.  I discussed the services we could provide and how Hospice would be able to support her and her husband. There was virtually no other family member to support this couple.  

Throughout the remainder of the Ben’s illness a hospice volunteer was able to be a part of the team that helped this family cope with an extremely unhappy situation. The hospice volunteer became a friend, especially for Mom. The volunteer had young children herself and even though this was a tough position for her it helped her identify with what Ben’s mother was going through.  

Ben died a few months after his eighth birthday.    When I visited the funeral home after the death of this child it was hard to believe that he had undergone such suffering.  He looked at peace and all the signs of struggle were gone.  The struggle will continue for the parents for years to come and the hospice volunteer will continue to be there to support them. 

Life is different for all of us and death is also different for everyone but Hospice Palliative Care Volunteers help to make a difference during the dying process.

– Anonymous Testimonial from Huron Hospice

What is Hospice Palliative Care?

Hospice palliative care is aimed at relieving suffering and improving the quality of life for persons who are living with, or dying from, advanced illness or are bereaved.

Palliative care is a special kind of health care for individuals and families who are living with a life-limiting illness that is usually at an advanced stage. The goal of palliative care is to provide comfort and dignity for the person living with the illness as well as the best quality of life for both this person and his or her family. A “family” is whoever the person says his or her family is. It may include relatives, partners and friends.

An important objective of palliative care is relief of pain and other symptoms. Palliative care meets not only physical needs, but also psychological, social, cultural, emotional and spiritual needs of each person and family. Palliative care may be the main focus of care when a cure for the illness is no longer possible. Palliative care services help people in later life who are ill to live out their remaining time in comfort and dignity.

Quality hospice palliative care neither hastens death or prolongs life. The goal of  hospice palliative care is to improve the quality of life for patients and their families facing problems associated with life-threatening illness.

Palliative care services are helpful not only when a person is approaching death but also during the earlier stages of an illness. Palliative care may be combined with other treatments aimed at reducing or curing the illness, such as chemotherapy. Families also benefit from support when their loved one is dying and after his or her death.

Watch Dr. Balfour Mount, the physician that founded palliative in Canada and created the term “palliative care” speak about Dying a Good Death.

The information presented and views expressed in this video represent the views of the interviewees, and do not necessarily represent the views of the Hospice Palliative Care Ontario.

A look inside…

It is not the length of life, but depth of life.

— Ralph waldo emerson.

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Hospice Palliative Care Ontario

A provincial healthcare association, comprised of unduly compassionate people.

Welcome! Thanks for landing on our blog. Our purpose is to unpack what hospice palliative care is all about. We hope you continue along with us as we journey through life together.

A little bit about us…

Hospice Palliative Care Ontario is a provincial association of hospices and palliative care providers, professionals, and volunteers throughout Ontario. We envision a future where every person and family in the province of Ontario can quickly and easily access the finest standard of hospice palliative care when required.

Our Purpose: We strive for a future where every person in Ontario has access to quality hospice palliative care.

Our Vision is to be the unified voice of collaborative, quality hospice palliative care in Ontario

Our Mission is to provide leadership on behalf of our members by informing policy and promoting awareness, education, knowledge transfer and best practices in the pursuit of quality hospice palliative care in Ontario.

Our Core Values:

Courage: We make the best decisions not just the popular ones. We dare to go down new roads and challenge accepted wisdom. We place clear expectations on one another and promote change.

Integrity: We are professional and honest in our relationships. We honor our commitments. We hold ourselves accountable.

Respect: We value the diversity of our members and stakeholders, their opinions, experience, and contributions.

What We Do

  • Encourage, develop, support, and provide leadership and guidance in the field of, hospice palliative care in Ontario
  • Promote the development and/or expansion of hospice palliative care services in Ontario
  • Promote research in the field of hospice palliative care
  • Promote education pertaining to hospice palliative care services for health professionals, volunteers and the general public

Disclaimer for HPCO

All the information on this blog is published with good intent and for general information purpose only. HPCO does not make any warranties about the completeness, reliability and accuracy of this information.

If you would like more information on hospice palliative care please visit www.hpco.ca