1. 18-NOV-16
“Communication at End-of-Life” for Personal Support Workers in Long- Term Care Module 2
Overall Objective of Module 2 (out of 4 modules overall):
To have participants think about their own thoughts, feelings, and beliefs about death, dying, aging, and loss
To explore how personal values and experiences can inform how we think about death and dying, and can also inform how we care for people who are ill and dying.
To review varying models that have been created to talk about stages and tasks of grieving
Resources needed prior to delivering content:
- Ensure that you have appropriate internet access for: (Slide 7)
Activity 1 Materials: Values Encounter Regarding DEATH – Handout for each participant and pens/pencils (Slide 3)
- Activity 2 Materials: Post-it notes - need approx for each participant, so a larger pack for each small group table (Slide 5)
- Activity 3 Materials: Perspectives on Dying – Handout for each participant (Slide 10)
Overall Content Flags:
Participants coming to your training may have had a wide variety of experiences with death and dying. Some people may have talked to others about their experiences, and for others they may not have ever talked openly with others about their experiences. It’s important as a result to talk about the importance of respecting how personal these conversations can be, and how important it is that participants really listen to others openly and respectfully. As our personal values are also informed socially and culturally, it’s possible that there will be many different values

2. What do I think/feel about death, dying, and loss?
18-NOV-16
What do I think/feel about death, dying, and loss?
Identify feelings and beliefs related to hospice palliative/end of life care
Explore personal values about death and dying
Explore personal experiences of grief and loss
Review Elisabeth Kübler Ross’s stages of Grief
Review William Worden’s Tasks of Grieving
Objective of Slide: To provide an overview of the content being reviewed in this module
It is very important that people take the time to identify their feelings, beliefs and experiences related to death, dying, aging, and loss. As has been documented, teaching in this area needs to be interactive, and needs to encourage participants to think critically about their own experiences.
“Teaching loss, grief, and bereavement…should be an interactive process to stimulate critical thinking and address the affective domain of learning. Personal and professional experiences of loss, grief, and bereavement are central to student’s learning of effective and compassionate care of the dying patient and their family. Strategies that explore such experiences allow students to move forward and focus on the cognitive retention of content related to loss, grief, and bereavement, as well as the ability to learn related psychomotor skills.” (Matzo et al, 2003, p 71)
Critical to the success of teaching people about death, dying, and loss, is to ensure that there is a strong environment of compassion, respect, and trustworthiness within the group. It is important for module trainers to build a strong rapport across the group, and to emphasize (and model) strong listening skills with responses that are empathic and nonjudgmental.
Additional Background Resources:
MacLeod, R.D., Parkin, C., Pullon, S., Robertson, G, (2003). Early clinical exposure to people who are dying: Learning to care at the end of life. Medical Education 37 (1),
Matzo, M.L., Sherman, D.W., Lo, K., Egan, K.A., Grant, M., Rhome, A. (2003). Strategies for Teaching Loss, Grief and Bereavement. Nurse Educator 28 (2), 71-76
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., McNeilly, M., Grambow, S., Parker, J., Tulsky, J.A. (2001). Preparing for the End of Life: Preferences of Patients, Families, Physicians, and Other Care Providers. Journal of Pain and Symptom Management 22(3),

3. Personal Values about Death
18-NOV-16
Personal Values about Death
What are my personal values about Death?
Role?
Meaning?
Beliefs about life after death?
What I fear the most?
Preferences for when and where I die?
Complete the handout on your own. After you finish, find one other person in the group and share some of your answers. Give your undivided attention as you share and listen.
Objective OF SLIDE:
Activity 1: A self-reflection exercise to think through one’s own personal values about death. Our personal values about death can inform a number of different elements: such as the role death plays throughout our lives; the meaning of death, the beliefs that one holds; the preferences one has; one’s fears about death etc. Some of your personal values about death may be one’s that you have thought a lot about, and you may have talked to others about these values as well. Other values may be things that you haven’t thought much about, or talked to others about, and may be harder to discuss.
[Needed: Handout (“Values encounter regarding DEATH” )for each participant and pens/pencils]
Step One: Distribute handouts to each participant
Step Two: Ask each participant to complete the handout on their own. Offer a ‘warning’, that some questions may be more difficult to answer than others. Participants may choose to add their own thoughts/answers if their views are not represented on the list of multiple choice answers.
Step Three: After everyone has completed the handout, they are to share some of their answers with a partner.
Instruction to Participants: Try to be mindful that each person is sharing personal and intimate information, and as a result, it is important to give the person sharing your undivided attention. After each person has shared, please thank the person for sharing their experiences with you. It is important that differences that might arise between people are seen as differences that are neither better/worse nor right/wrong.
[The following slide contains additional discussion questions for sharing in pairs]
Step Four: (if time allows and the group is not too large) Invite a larger group discussion of participants’ responses to these questions (Slide 4).
Content Flags: In any sharing activities (and particularly in larger group discussions) there is always a risk that someone may respond quite critically to what someone else values or believes. Discussions may shift towards topics such as physician assisted suicide or residents who live in long-term care for many weeks and months requiring total care, with very minimal intake and significant confusion. If this happens it is important to ensure there is adequate time to really talk about difference and how we can (and should) respond when someone else values something appears to be opposite or in conflict with our own beliefs.
Additional Background Resources:
Bowling D, Hoffman DA. (2003). Bringing Peace into the Room: How the personal qualities of the mediator impact the process of conflict resolution. San Francisco, CA: Jossey-Bass
Kotlyar I, Karakowsky L. (2006). Leading conflict?: Linkages between leader behaviors and group conflict Small Group Research 37(4):
Matsui, M., Braun, K. (2010). Nurses’ and care workers’ attitudes toward death and caring for dying older adults. International Journal of Palliative Nursing 16(12),
Turner, M. (2001). Groups at Work: Theory and research. Mahwah, NJ: Lawrence Erlbaum.

4. Answer the Following Questions…
18-NOV-16
Answer the Following Questions…
What was difficult to discuss; and why?
What was easier to discuss; and why?
How does it feel to discuss these topics with others?
What surprised you as you listened to someone else talk about death?
What did you learn about yourself in doing this exercise?
Objective OF SLIDE:
To have participants think about how/why some values are easier (or more difficult) to talk about than others. Understanding how/why some conversations are easier than others, allows participants to think about how/why there might be differences, and how to approach these conversations with others.

5. 18-NOV-16
Activity: Cherished Objects, Values, People
Create a list of objects, values, and/or people that you cherish in your life and that give you meaning and purpose for living.
Objective OF SLIDE:
To have participants think about the objects, values and people that they cherish and experiencing what it feels like to have these elements taken away. This activity offers an entry into thinking about aging, loss, dying, grief and what it feels like to lose objects/values (such as independence), and people.
Activity 2: Listing of cherished objects, values, and people
Step One: Each participant is given approx sticky notes. Each participant is asked to write down the objects, values, and/or people that they cherish; each item is written on a separate post-it note that is placed on the table in front of them.
Step Two: After everyone has finished writing out their items, ask each participant to remove one of their items from the table.
Step Three: Have the facilitator (or if the group is larger, have someone at the table) take away one of your items.
Step Four: Have the facilitator (or if the group is larger, have someone at the table) take away all of your items one by one.
Questions for the participants to discuss:
How does it feel to have your list of cherished objects, values, and people in front of you?
How does it feel to take away one of your cherished items?
How does it feel for someone else to come and take away one of your cherished items?
How does it feel for someone else to come and take away all of your cherished items?
How does this exercise relate to people that you care for in long term care?

6. Grief & Loss Vocabulary
18-NOV-16
Grief & Loss Vocabulary
GRIEVING: A normal, natural, and individual (internal) response to a loss
MOURNING: The process by which we publicly work through a loss. It is a form of healing and people need opportunities to experience this process.
BEREAVEMENT: The event of loss
Objective OF SLIDE:
To introduce and differentiate between a few different terms that are used when people talk about grief and loss. Distinguishing between these terms is important, as each of these words introduces a different aspect of grief and loss. Grieving, a normal, natural and individual response to a loss, is the internal process and response that each person has when they lose a loved one. Grieving is different from mourning, in that mourning speaks to the process of individual people sharing their grief with others. Bereavement is the event of loss-- when a loss has occurred and someone is shifted from a role of supporting someone else who is dying--to an experience of being bereaved.
Additional Background Resources:
Texts:
Attig, T. (1996). How We Grieve. NewYork, NY: Oxford University Press
Wolfelt, A. (2005). Companioning the Bereaved: A soulful guide for counselors and caregivers. Fort Collins, CO:Companion Press.
Websites:
National Cancer Institute: PDQ Grief, Bereavement, and Coping with Loss. Bethesda, MD: National Cancer Institute.
A Guide to Grief, Bereavement, Mourning, and Grief Date last modified 03/06/ Available at Accessed 07/17/2015.

7. DR. ELISABETH KÜBLER-ROSS
18-NOV-16
Stages of Grief
Objective OF SLIDE:
To critically address (and debunk) the stages of grief that have been connected to the work of Dr. Kübler-Ross. Dr. Kübler-Ross, a psychiatrist who worked with people who were dying, TRIED to understand how people who are facing death (or a loved one’s death) grieve. Dr. Kübler-Ross’s work with people who were dying was shifted into training seminars to try and address the lack of content within the medical curriculum on the experience of dying and loss.
While Dr. Kübler-Ross’s work was shifted to a theoretical model of stages of grief, it was inadvertently interpreted as if each of these stages were distinct, separate phases that all people who were dying (or supporting someone else who was dying) would experience. Each of these stages are not linear (people do not necessarily experience each emotion in succession), and there may be many other emotions that people may experience when they are grieving.
Video Activity:
(1 minute 42 seconds in length)
[CAUTION, in accessing this clip, there may be some images that appear around the video that are not appropriate. It is recommended that you open up the video’s web address prior to starting your session and begin playing the video at full screen (and pressing pause), so that the video content is the only piece shown in the group].
Of interest too, is that prior to Dr. Kübler-Ross’s death in 2004, she co-wrote her last book entitled, On Grief and Grieving: Finding the meaning of grief through the five stages of loss, with Dr. David Kessler.
Additional Background Resources
Kübler-Ross, E. (1969). On Death and Dying: What the dying have to teach doctors, nurses, clergy and their own families. New York, NY: MacMillan Books
Kübler-Ross, E. (2009). On Death and Dying: What the dying have to teach doctors, nurses, clergy and their own families. 40th Anniversary Edition. Oxon, OX: Routledge
Kübler-Ross, E, Kessler, D. (2014). On Grief and Grieving: Finding the meaning of grief through the five stages of loss. New York, NY: Simon and Schuster
DR. ELISABETH KÜBLER-ROSS

8. Stages of Dying/Grief Denial Anger Bargaining Depression Acceptance
18-NOV-16
Stages of Dying/Grief
Denial
Anger
Bargaining
Depression
Acceptance
Objective OF SLIDE:
Recognizing that the stages of dying/grief are not linear, and are not an exhaustive list of what everyone will experience. There is also merit in thinking about what some of these emotional “stages” include, and what kinds of things people may be experiencing as they die, and/or as they grieve the loss of a loved one.
Denial – This speaks to an emotional response when someone tries to avoid something by denying it will happen, or denying that it is having any real impact. This can often happen when someone is not able to fully ‘feel’ what is happening, and denying it will happen (or has happened), makes it a little easier to cope with the present reality.
Anger – This speaks to emotional feelings of frustration, and can be combined with a sense of injustice and unfairness. When people are angry they may push other people away, and they may find it difficult to accept support. Feelings of anger and hurt are important feelings to express, and when someone is supported to feel these feelings (without feeling badly or feeling guilty about having these feelings in the first place), anger can help a person articulate what it feels like to be bereaved, and to live on, after the loss of a loved one.
Bargaining – This speaks to an emotional response whereby someone feels like the situation may be able to be modified if the person is able to change a behaviour or do something differently. Bargaining is something that can be associated with a person’s sense of religion or spirituality or faith, in that some people may ‘bargain’ with a Higher Being to not have a loved one be ill or gone.
Depression – This speaks to an emotional response when someone feels a sense of hopelessness and chronic emptiness. Often when someone is depressed it can be difficult for them to accept support, and it may be difficult for the person to connect their depressed feelings with a particular event or circumstance.
Acceptance – This speaks to an emotional response where someone feels like they have accepted what has happened, and they have found a way to integrate the meaning of this loss into their lives. This does not mean that they do not still grieve the loss of a loved one, but rather they have found a way to live their lives where this loss and their loved one is still with them in a different way.
Additional Background Resources:
Elisabeth Kübler-Ross Foundation:
NIH Biography -

9. THE FOUR TASKS OF MOURNING DR. WILLIAM WORDEN (TEAR)
18-NOV-16
THE FOUR TASKS OF MOURNING DR. WILLIAM WORDEN (TEAR)
TASK 1: TO ACCEPT THE REALITY OF THE LOSS
TASK 2: EXPERIENCE THE PAIN OF THE LOSS AND EXPRESS IT WITHOUT JUDGEMENT
TASK 3: ADJUST TO THE NEW REALITY WITHOUT THE LOST PERSON OR OBJECT
TASK 4: RE-ESTABLISH AND RE-INVEST IN EMOTIONAL TIES
Objective of Slide:
As a way of speaking to the process that is required as one grieves and mourns, Dr. William Worden came up with the acronym “TEAR” to address the ‘grief work’ that people need to do as they mourn.
T = To accept the reality of the loss
E = Experience the pain of the loss
A = Adjust to the new environment without the lost person
R = Reinvest in the new reality
Additional Background Resources:
Worden, J. W. (2008) Grief Counseling and Grief Therapy: A handbook for the mental health practioner. 4th Edition. Springer Publishing Company
Worden, J.W. (1991). Grief Counseling and Grief Therapy: A handbook for the mental health practioner. 2nd Edition. Routledge

10. Manifestations of Grief
18-NOV-16
Manifestations of Grief
PHYSICAL
EMOTIONAL
BEHAVIOURAL
SPIRITUAL
Objective of Slide:
Address how grief can manifest (or present itself) in people in many different ways. Just as hospice palliative care focuses on ‘total pain’ and ‘holistic care’, it is important that we understand that grief can show itself in physical, behavioural, emotional, spiritual, and cognitive domains. Some of these domains are a little easier for us to see in ourselves (and perhaps understand), while some domains are harder for us to see in ourselves, and others.
Activity 3: Experience of loss exercise
A self-reflection exercise to think through one’s own personal experiences and perspectives on loss and grief. Just as with our personal values, our personal experiences of loss can inform a number of our beliefs and attitudes towards aging, death, dying, and loss.
Step One: Have people think about a specific loss
Step Two: Ask people to think about the following questions.
When did it happen?
How did they initially feel when the loss occurred?
What type of emotions did they feel?
How did this loss affect their health or their body.?
How did grief affect their mind and their ability to use their mind?
What type of thoughts did they have at this time?
How did grief affect their behaviour and daily tasks?
How did this loss affect their heart and soul?
Step Three: Have people share their experiences in groups of two
Step Four: Separate participants into 5 small groups. Each group will have a different domain, and will write down the manifestations that varying group members experienced after their loss.
Group One: Physical
Group Two: Behavioural
Group Three: Emotional
Group Four: Spiritual
Group Five: Cognitive
COGNITIVE

11. PHYSICAL MANIFESTATIONS OF GRIEF
18-NOV-16
PHYSICAL MANIFESTATIONS OF GRIEF
Tightness in the throat
Shortness of breath
Disturbed sleep patterns
Loss of energy
Change in appetite
Dry mouth
Hollowness in the stomach
Tightness in the chest
Objective of Slide:
This slide provides an overview of some of the ways that grief and loss may be experienced physically in the body. People may have one or many of these symptoms. Sometimes people who are grieving are not aware that these symptoms may be related to their grief, and may worry that their health is compromised. While it is always important to rule out that there are not any other medical reasons that people are having these symptoms, the symptoms above are very common, but can be surprising and frightening for people to experience.
Additional Background Resources:
Websites
Wolfelt, A. (2007). Healing your Grieving body: Physical Practices for Mourners -
Texts/Articles
Kowalski, S.D., Bondmass, M.D. (2007). Physiological and psychological symptoms of grief in widows. Research In Nursing & Health 31(1),

12. BEHAVIOURAL MANIFESTATIONS OF GRIEF
18-NOV-16
BEHAVIOURAL MANIFESTATIONS OF GRIEF
Crying/sighing
Withdrawal of independence
Loss of interest
Restlessness
Hostile outbursts
Treasuring objects that belong to the deceased
Visiting places that remind the survivor of the deceased
Objective of Slide:
This slide provides an overview of some of the ways that grief and loss may be experienced and reflected within people’s behaviour. Many of these behaviours may be quite different from a person’s normal behaviours, and as a result they can be quite upsetting for both the person grieving/mourning, as well as their loved ones. It is important to support a person grieving/mourning, and to help them find things that provide comfort to them.

13. EMOTIONAL MANIFESTATIONS OF GRIEF
18-NOV-16
EMOTIONAL MANIFESTATIONS OF GRIEF
Sadness and pain
Anger hostility
Personal guilt or shame (e.g. remorse, regret)
Anxiety
Loneliness and Helplessness
Mood swings
Shock
Yearning
Relief
Numbness
Objective of Slide:
This slide provides an overview of some of the ways that grief and loss may be experienced and reflected within emotional realms.
Additional Background Resources:
Bonanno, G.A., Kaltman, S. (2001). The varieties of grief experience. Clinical Psychology Review 21(5),

14. SPIRITUAL MANIFESTATIONS OF GRIEF
18-NOV-16
SPIRITUAL MANIFESTATIONS OF GRIEF
Doubts about God/Higher Power/Creator
Lack of belief or faith in a higher power
Unable to pray, despair
Guilt
Dreams: seeing the deceased
Hopelessness
Decreased value of life
Shame
Regret
Resentments
Objective of Slide:
This slide provides an overview of some of the ways that grief and loss may be experienced and reflected within a person’s sense of spirituality or meaning-making.
Additional Background Resources:
Websites
Dr. C Puchalski – GW Institute for Spirituality & Health -
Texts/Articles
Becker, G., Xander, C.J., Blum, H.E., Lutterbach, J., Momm, F., Gysels, M., Higginson, I.J. (2007). Do religious or spiritual beliefs influence bereavement? A systematic review. Palliative Medicine 21(3),
Doka, K.J., Morgan, J.D. (1993). Death and Spirituality. Amityville, NY: Baywood Pub Co
Puchalski, C. M. (2008). Addressing the spiritual needs of patients. Cancer Treatment and Research, 140, 79-91

15. COGNITIVE MANIFESTATIONS OF GRIEF
18-NOV-16
COGNITIVE MANIFESTATIONS OF GRIEF
Disbelief
Confusion
Foggy mind
Poor memory
Forgetfulness, absent minded
Inability to concentrate
Poor judgment
Poor reasoning
Perception distortion
Ability to learn is compromised
Objective of Slide:
This slide provides an overview of some of the ways that grief and loss may be experienced and reflected in cognitive functioning (thinking/reasoning). It is important that people who are grieving and mourning understand that these symptoms can occur. It can be distressing for people who are grieving and mourning to experience cognitive changes, as these changes can have a large impact on how people see themselves.
Additional Background Resources:
Malkinson, R. (2001). Cognitive-Behavioral Therapy of Grief: A review and application. Research on Social Work Practice. 11(6),

16. LOVE AND GRIEF “Only people who avoid love can avoid grief.
18-NOV-16
LOVE AND GRIEF
“Only people who avoid love can avoid grief.
The point is to learn from it and remain
vulnerable to love”
-John Brant
Objective of Slide:
To remind participants that loving someone means that we will also need to experience grief. While it can be very painful to grieve and mourn, the experience of loving others and learning from this love, reminds us of our shared humanity.

17. LOVE AND GRATITUDE Love and Gratitude The agony is so great…
18-NOV-16
LOVE AND GRATITUDE
Love and Gratitude
The agony is so great…
And yet I will stand it.
Had I not loved so very much
I would not hurt so much.
But goodness knows
I would not want to diminish that previous love
By on fraction of an ounce.
I will hurt!!
And I will be grateful to the hurt
For it bears witness to
The depth of our meanings,
And for that I will be eternally grateful.
-Author Unknown

18. NEEDS OF THOSE IN MOURNING
18-NOV-16
NEEDS OF THOSE IN MOURNING
SHARE FEELINGS - Allow people to ventilate their emotions and fears
AFFIRM THEIR PERSONHOOD – Provide support and let them verbalize memories
FEEL SUPPORTED AND ACCEPTED – They may have fear of abandonment
Objective of Slide:
To review the needs that people who are in mourning have, and highlight the importance of other people respecting and supporting those needs.
It is very important that people in mourning have support to share a wide range of emotions, feelings, and concerns. While people can be well-intentioned, it is important that those in mourning are able to share all of their feelings (without judgment, or without someone trying to shift or translate these feelings into something more positive or happier or easier to hear).
It is important that people are encouraged to talk about how their lives have been touched (and changed) in numerous ways because of the loss of a loved one. One’s sense of identity (and personhood) can be very interwoven with the identities of our loved one’s (parents, siblings, spouses, partners, friends). The loss of a loved one means that someone needs affirmation and support with regards to understanding who they were when their loved one was alive, and who they are now that their loved one has died.
It is important that people in mourning feel supported and accepted and that they are reassured that others want to be with them. Fear of abandonment can be quite high after a loss of a loved one, and there can be concerns and fears that other loved one’s will die, or leave them. Knowing that others are surrounding the person who is mourning is important, not to fix the grief, but to travel along with them as they mourn.
Additional Background Resources:
Websites
Wolfelt, A. The Mourner’s Bill of Rights Wallet Cards -
Texts/Articles
Wolfelt, A. D. (2004). Understanding Your Grief: Ten essential touchstones for finding hope and healing your heart. Fort Collins, CO: Companion Press.

19. NEEDS OF THOSE IN MOURNING
18-NOV-16
NEEDS OF THOSE IN MOURNING
Expressions of DEPENDENCY are to be expected
To FIND MEANING IN THE DEATH EXPERIENCE – Do not minimize this. People expend massive amounts of psychic energy in the process
6. Need for REALITY-TESTING - To be reminded to stay in the present
Objective of Slide:
When people are mourning, they may need more from others, and may need support to do things that they did on their own in the past.
They may also need to find meaning in the death of their loved one, and this may involve a number of discussions as they try and process why and how their loved one died.
Finally, people who are mourning may need others to help them discern what is real and what isn’t, and may need help to stay connected to what is happening in the present, versus what happened in the past.
Additional Background Resources:
Books/Texts
Neimeyer, R.A. (2006). Lessons of Loss: A guide to coping. Memphis, TN: Centre for the Study of Loss and Transition.
Parkes, C.M., Prigerson, H.G. (2010). Bereavement: Studies of grief in adult life. 4th Edition. East Sussex, UK: Routledge.

20. Death ends a life, but not a relationship
18-NOV-16
Death ends a life, but not a relationship
Objective of Slide:
To talk about the connections that exist between people, and how death reflects the end of a life but not the end of a relationship.
P. Karst’s book, “The Invisible String” is shares the story of a family consisting of a mom and her two twins, Jeremy and Liza. The focus is on how there is a string that is invisible that connects us with the people we love.
“THE INVISIBLE STRING is a very simple approach to overcoming the fear of loneliness or separation with an imaginative flair that children can easily identify with and remember. Here is a warm and delightful lesson teaching young and old that we aren't ever really alone and reminding children (and adults!) that we are loved beyond anything we can imagine. "People who love each other are always connected by a very special String, made of love. Even though you can't see it with your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love.“
“Specifically written to address children's fear of being apart from the ones they love, The Invisible String delivers a particularly compelling message in today's uncertain times that although we may be separated from the ones we care for, whether through anger, or distance, or even death, love is the unending connection that binds us all, and, by extension, ultimately binds every person on the planet to everyone else.”