Topic: 2

The Palliative Approach to Care

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What You Need to Know

The Indigenous Wellness Framework describes wellbeing as coming from a balance of four kinds of wellness. Each kind of wellness creates a key outcome:

  • Spiritual wellness creates hope, and is facilitated when we are connected to beliefs, identity, and
  • Emotional wellness creates a sense of belonging and is facilitated through attitude, relationships, and connections to community and family.
  • Mental wellness creates meaning and is facilitated through intuition, understanding, and rationale.
  • Physical wellness creates purpose and is expressed through wholeness, a way of being, and a way of doing.

Many similarities can be seen with the palliative approach to care. The palliative approach to care emphasizes the relationships between the body, mind, and spirit and the need for care to address these different areas of self in order to achieve wellness. The palliative approach to care honours the connections and relationships that people have with family members, community members, and care providers, and views the family as the unit of care. The palliative approach to care also focuses on wellness and healing through physical healing, spiritual healing, and the healing of families through grief work.

What is the Palliative Approach to Care?

  • Is WHOLE – person health care, meaning it is care that focuses on the body, mind, and The goal is to relieve suffering and improve quality of life until the end of life, for persons who have a serious illness.
  • Focuses on the highest quality of living possible, until the person dies.
  • Provides services not only to the person who has a serious illness, but also to his/her family.
  • Begins at time of diagnosis and continues on after the person passes with grief and bereavement support to family and loved ones.

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 breavement.

Six Stages of caregiving

Many people have experienced what you are experiencing now. In fact, it is quite common to experience stages as a caregiver. Knowing that what you are experiencing is a normal part or stage of your very unique caregiving journey may provide you with some comfort. Understanding the stages of a caregiver’s journey may help you to anticipate what is coming next and prepare for that next stage. This resource can help you do that.

You may not have actively or even consciously made the decision to become a caregiver or maybe you have. Maybe it is a way of honouring the relationship that you have with the person that you are caring for. Or maybe there simply isn’t anyone else to do it. But one way or the other in this first stage of the journey, you begin to take steps to prepare for your new role. You share fears, concerns, and insecurity as you talk to your friends, co-workers and other family members. You gain a new perspective, accepting that your relationships, roles, responsibilities, resources and your hopes and dreams may be delayed or disappear altogether. You may find yourself in role reversal and with that can come some grief for the loss that you feel for how things once where.

In the second stage of a caregiver’s journey, your goal is to learn as much as you can as fast as you can. You start to realize that this caregiving role is much bigger than you first realized. It is important that you find relief for you and as much care as you can and will need to access for the person that you are caring for. Research, read, make calls, and ask questions. Find out what is available to you. If you are employed it is particularly important to find out how you will manage work and caregiving too. This stage is often compared to arriving in a foreign land. The caregiver is trying to get his or her bearings, to learn the lay of the land. Now is the time for Advance Care conversations if you haven’t had them already. See Topic #7

In this third stage, your calendar is dominated by what feels like endless appointments. You feel like your worst fears are emerging. You feel like you don’t know who to trust or what to believe or where to find someone to talk to that understands what you are going through. Your daily anxiety and stress may increase. Your first responsibility must be for yourself. You know on the airplane when they ask you to fit your oxygen mask before helping the person next to you? Caregiving is the same: Your first responsibility must be to care for yourself. Do everything you can to prevent caregiver burnout, illness, and injury. Your ability to continue caregiving and to have a healthy life after caregiving depends on caring for yourself now. See Topic #3

You are now involved in all aspects of caregiving for your family member or friend. You have come to the realization that you must sink or swim so you are swimming as hard and as fast as you can. You may be happy to help but you can’t help but wondering “why me?” Over time, unless you take steps to prevent it, you will become exhausted physically, mentally and emotionally. Family dynamics become increasingly important. Stressors from that may increase too.

You are once again in transition. Lots of good will is directed your way but you are unsure how to apply that good will. You realize or imagine an end to your caregiving role either because the person is getting well and will soon be caring for themselves once again or because the person that you are caring for has little time left. Your life changes once again and you must adapt to the new “normal”. You have so many questions about how you can possibly move forward. What does this new role, life of yours all mean? You may feel regret or guilt or sadness or relief and all those feelings are normal. Don’t be too quick to give up those supports that you have leaned on for the last while. If you don’t already belong to a support group, this can be the time to join one for sure. Continue writing in your journal. Engage in relaxation and spiritual practices. Lighten your schedule to allow quiet times to be alone with your thoughts. See Topic #15

Do you recognize these stages? What stage would you say that you were in at the present time? How might you prepare for the stage that lies ahead? Jot down your response.

 

Caregivers often find it hard to ask for help. You need to get used to doing so even if it feels uncomfortable. It is important to talk with your family and friends about ways they can help and ask your doctor or health care provider about available resources.

1. Read this scenario

John is caring for his wife Elspeth. Elspeth has always been the cook in the family. John is missing his wife’s cooking.

2. What specific request could John make of Elspeth’s friend? Think of a response before checking the sample response below.

“I miss my wife’s cooking now that she is ill. I’m struggling just to heat frozen dinners, and I know you’re a good cook. Could you help me learn to cook a few simple meals or bring us some home cooking once in a while? It would be such a relief to me, and I could pay for the ingredients.”

1. Read this scenario.

Taking care of Elspeth and the grandchildren too is very tiring for John. What could he ask his community to help with?

2. What specific request could John make of Elspeth’s friend? Think of a response before checking the sample response below.
1. Read this scenario.

Frank has Parkinson’s disease. Louise, his wife, and primary caregiver, has known about Frank’s diagnosis for a few years. However, the disease has progressed so that Frank’s movements have slowed dramatically. He is unable to walk normally or stand straight up. Although Frank has some independence he does need help with personal grooming, home maintenance, mobility, preparing meals. Which of these tasks would you ask for help with and who would you ask? What would you say?

2. Think through the scenario now and consider who and how you will ask for help when the time comes.

 

ADDITIONAL RESOURCES

Use these additional resources to learn more about the topic of the palliative approach to care.

Saint Elizabeth Podcasts: Talking Care: A Caregiving Journey Radio Show
https://player.fm/series/talking-care-a-caregiving-journey

The Caregiver Network
https://thecaregivernetwork.ca/about/

Alzheimer Society of Canada: other resources for caregivers
http://www.changefoundation.ca/profile-of-family-caregivers-ontario/

Family Caregivers Voice
http://www.familycaregiversvoice.ca/

Canadian Cancer Society If You’re a Caregiver
http://www.cancer.ca/en/cancer-information/cancer-journey/if-you-re-a-caregiver/?region=on