Your Community Care Team
Guiding Principles of the Palliative Approach to Care
- Views the family as the “unit of care” and not solely the individual who is dying.
- Views life and death as a normal process.
- Does not speed up nor postpone death.
- Provides relief from pain and other distressing symptoms.
- Believes in the right of people to participate in informed discussions about healthcare options and supports them to choose the best possible options based on that information.
- Offers support to help people live as actively as possible until death.
- Offers support to help family cope during the individual’s illness and in their own bereavement.
Palliative Care is a community affair. It involves many different people and each community is different. If the choice is to be at home it is important to plan for care ahead of time. Part of this planning is to find, who can provide care and how care can be provided in your community. For example, what resources such as equipment are needed and available before the person returns home?
In First Nations Communities, someone is always around to help.
Communication and the Team
Before discharge from hospital, or on return to the community, a meeting with the person (if well enough), the family, community and the medical people, can be helpful. This meeting can take place in person, by telephone, or teleconference, with the aim of developing the plan of care.
Finding the Community Care Team
Hospice palliative care uses a team because the help provided may be very involved and often cannot be carried out by just one person. The palliative care team is a group of people who work together with a common purpose - to help the dying person spend their last days as they choose. Each care provider is a valuable member of the team.
But, the person and their family are the most important members of the team.
Some people who might be helpful as part of the team are: family members, friends, elders, the nurses at the nursing station and in the community, the homecare coordinator, case manager, homecare workers, doctors, spiritual caregivers, and traditional healers.
It is important to find the gifts each member brings to the team, in the home community and from neighbouring communities and larger centers.
Why the Community Team Needs to Meet
Meeting regularly with the team to talk about how things are going and adjusting the plan helps to prepare for changes as they come along.
Some reasons to meet may be:
a. To talk about goals of care
An example of a goal of care is the person’s wish to spend their last days at home in comfort even if they are very sick.
Asking these questions may help to make decisions:
- Why are we doing this?
- Is it what the person wants?
- Will it make them more comfortable?
b. To solve problems as they come up
c. To work out differences between and among the family and providers
d. To prepare everyone for changes: For example, what to expect as the illness progresses and how to provide specialized care if it is needed
e. To plan for crisis: For example, what if the person has bad pain in the middle of the night - who do we call?
f. To provide support for one another at this difficult time
g. To keep communication channels open
h. To prepare the care team and family for when death happen
What to do when another family member is struggling
As a caregiver you have so much to deal with already just caring for the ill person so when a family member is struggling to deal with the situation, you might become frustrated that you need to deal with this too. You need strategies for helping solve the situation.
What you need to know is that everyone reacts to a family health crisis differently. Some people suddenly become frightened and confused and may even distance themselves from the situation. Other people may become angry and frustrated and lash out at others looking for someone to blame. Others may move into “fix-it” mode.
All these reactions are examples of “displacement” or a defence system that inhibits what the person is really feeling. This built-in defence system takes over to “displace” the potentially threatening ideas, feelings, memories, wishes or fears. The problem with displacing feelings is that they negatively affect the person’s ability to relate to others.
If you feel stressed dealing with the family member who is “displacing” their true thoughts and feelings, then imagine how that person is feeling? Their anxiety and stress is taking an enormous amount of energy. The best strategy for you as the caregiver is to acknowledge the truth and their fear and sadness. Put names to these things. Then ask them to roll up their sleeves and help! As the caregiver, you could say, “I know you are frightened and sad. I am too. But, we all need to help. This is how you can help: Don’t avoid what is making you uncomfortable, run toward it. Run toward the person who is ill and tell them you love them. Then let’s talk about how you can help.”
But you are equipped to deal with them.
Circle of Care
In all likelihood you will never have as much of these people’s time as you would like.
Understanding the Health Care Team
- Write down the names of all the different healthcare professionals involved in the care.
- Now write down their role in the care.
- Be sure to keep track of who these people are. There may be several of them.
- The person that you are caring for may need to be reminded too of who these health care professionals are and why they are involved.
Part of building a strong team at home is identifying:
- What needs to be done?
- Who is available to help?
- What role fits each team member best?
Listed below are some items that might need to get done. You can edit this list to fit your situation. Record the items and whether you are able to do the item or if you think that you might need help.
Things I need:
- Time for me to rest, take a break, have a shower, get some fresh air or exercise
- A chance to let off some steam
- Home maintenance (e.g., painting, light repairs)
- Laundry (e.g., washing, ironing, shopping for supplies)
- Groceries and meal planning
- House Cleaning
- Home maintenance
- Safety checks (e.g., daily confirmation that the person is safe)
- Pet Care
Daily Living Needs
- Transportation to and from appointments
- Bathing and showering
- Meal preparation
- Home safety adaptations (e.g., remove fall hazards, add bathroom rails, etc.)
- Arranging doctor/care provider appointments or determining if the doctor can make house visits as the person declines
- Communicating with health care providers and explaining to the care recipient (ask questions, take notes, )
- Medication (e.g., placing orders, picking up, monitoring use)
- Paying bills
- Accessing benefits
- Banking (know bank location, credit cards, lines of credit)
- Financial Planning (managing investments)
- Organizing important documents
- Will (up to date and securely stored)
- Power of Attorney (up to date and securely stored)
Who is available to help?
For those tasks that you need help with, identify some people or organizations that might be willing or able to help. Next to their names, list some things they might be good at, or what they might enjoy helping with.
1. Read this scenario.
Jim has diabetes and suffers from a number of serious side effects as a result. Jim used to be at the centre of community life. Barb used to be the quieter one in the couple, but now, given Jim’s health challenges, she has taken on more and more responsibilities. Barb often feels stressed by the load that she carries.
Jim has four brothers who are also have partners. For many years, Jim and Barb’s best friends were also his brothers and their partners. The families all live close to one another. Jim still enjoys going to the community centre, where he and his brothers have gone for years.
With Jim’s changed health status one of the brothers and his partner have become increasingly distant, rarely calling or visiting anymore. Barb knows that Jim’s feelings are hurt by this behavior but he doesn’t want her “to make a fuss”.
2. What advice would you give Barb on what she could do to help resolve why Jim’s brother and his wife are acting this way? Think about your advice before checking the suggested response below.
As the caregiver, say, “I know you are frightened and sad. I am too. But, we all need to help. This is how you can help. Don’t avoid what is making you uncomfortable, run toward it. Run toward Jim and tell him that you love him. Then let’s talk about how you can help.”
Use these additional resources to learn more about the topic of handling family members’ difficult reactions.
Centre for Addiction and Mental Health
Trauma is a natural emotional reaction to terrible experiences that involve actual or threatened serious harm to oneself or others. However, for some people, the thoughts or memories of these events seriously affect their lives long after any real danger has passed. This is posttraumatic stress disorder (PTSD).
Canadian Virtual Hospice
“When to Tell the Children: Preparing Children for the Death of Someone Close to Them”
Palliative Care Toolkit for Aboriginal Communities
Pauktuutit's Cancer Glossary