A Framework for Palliative Care

As a society, we are so focused on prolonging life and curing illness that very little thought is given to when we experience the death of someone close to us. The grieving process can often begin while the person is still alive. Individuals who have experienced a death need time to grieve, to remember, and to heal. They also may need help to find information, resources and support.

When is the best time to introduce grief support?

Community engagement is a process that aims to build a broader network of support around an individual with a serious illness and their family.  It can involve raising public awareness, education and skills training, connecting with existing resources, building alliances, and creating new approaches to challenging issues through collective action.

Are there programs in your community, formal or informal, that helped/are helping you:

a) find the information and services you need?

b) provide care? 

c) cope with the pressures and stresses of being a caregiver?

Is there anything that could help you more?

A 2014 Ipsos Reid Survey commissioned by the Canadian Hospice Palliative Care Association (CHPCA) of general practitioners, family physicians and nurses in primary care found that 20-25% of practicing physicians are not very comfortable or not comfortable at all, 50% are only somewhat comfortable and only 25-30% of practicing physicians felt very comfortable providing palliative or end of life care.

How could interactions between health care providers and persons with life-threatening conditions be improved?

Palliative care should be accessible to all, regardless of health, social or socioeconomic status. However, our Canadian care delivery model was developed with certain assumptions about the people receiving care; assumptions such as the care recipient has stable and secure housing, an informal support network (family and friends), a relatively predictable disease trajectory, the mobility to access their health care teams, the ability to communicate without language barriers to their health care provider team such things as pain, values, hopes and wishes. These are just some of the barriers facing special populations in Canada, and the list only gets at a small number of the issues they face.

Many vulnerable or underserviced populations don’t get referred to palliative care, or do not get referred early enough that it can make a difference while they are alive.

How can we raise awareness about palliative care for these populations in general so that families themselves can advocate for access?

How can we improve access to palliative care for special populations?

In your experience what needs are most important at end of life? If you are a person living with a life-threatening illness, or a caregiver, how well are these needs being met?

If you are a health care provider, how do you help meet these needs?

When you think about your own death, what is most important to you? (examples include location, who is near you, what type of care, how much time to prepare, etc.)

A caregiver, or family caregiver is a person who takes on an unpaid caring role for someone who needs help because of a physical or cognitive condition, an injury or a chronic life-limiting illness.

• One in four Canadians are caregivers – 54% are women, and 46% are men

• 50% of caregivers are between the ages of 45 and 65 (their peak earning years)

• 6.1 million caregivers are juggling caring for someone close to them as well as their careers

• Caregivers in Canada spent over $12 million in 1 year on expenses related to their caregiving role

  (Carers Canada http://www.carerscanada.ca/carer-facts)

What challenges did you face as a caregiver to someone who was living with a life-threatening illness? What type of support would have made it better for you? For example:

• Understanding disease pathway

• Knowing what to expect – how to prepare

• Financial supports

• Respite services (someone to look after my loved one while I took care of other things)

• Home care / community supports

• Flexible workplace programs

Where did you turn to for supports and information? Are you aware of the many on-line resources available in your province or territory, as well as Canadian Virtual Hospice, Carers Canada and Mygrief.ca?

Many of these can be found in the Important Links section of the consultation.

May 6-13^th 2018 is National Hospice Palliative Care Week!

Palliative care is about living well, right to the end.

Dr. VJ Periyakoil, the Director of Stanford Medicine’s Palliative Care and Education Program conducted the first ever “Bucket List” Study where she examined the importance of identifying goals a person wishes to accomplish before they “kick the bucket” or die.

She explains: “making a bucket list allows us to reflect on our values and goals and identify important milestones and experiences that we want to have in our lifetime.” 

Sharing your bucket list with your health care provider is useful when speaking about treatment plans. Without an understanding of what important milestones you wish to achieve, your doctor may recommend treatments that get in the way of you achieving your goals.

What is on your “bucket list”: What are the top five things you would like to accomplish or do before you die?