PERT Program

Tip of the Month: December 2003


WORKING WITH FAMILIES


Main Entry: 1fam·i·ly
Pronunciation: 'fam-lE, 'fa-muh-lE
Function: noun
Date: 15th century
1 : a group of individuals living under one roof and usually under one head : HOUSEHOLD
2 a : a group of persons of common ancestry : CLAN b : a people or group of peoples regarded as deriving from a common stock : RACE
5 a : the basic unit in society traditionally consisting of two parents rearing their own or adopted children; also : any of various social units differing from but regarded as equivalent to the traditional family ‹a single-parent family› b : spouse and children ‹want to spend more time with my family›
(Merriam-Webster Dictionary, 2003)


Another way to define family: "for whom it matters."
(Social work systems theory)


We all come from a family.

However, each person defines family according with his or her own culture, personal experiences, and values. As you can see in the definitions listed above, "family" is identified in many ways. And just as definitions differ from one family to the next, so do behaviors. Some families function well most of the time; others appear to barely function at all. As nursing home staff, you observe and are influenced by both the strengths and the challenges of the group of people whom your residents call family. Heading into the holiday season, you will likely see the best and worst of family behavior. The societal emphasis on good will and cheer during the holidays may intensify family members' experience of sadness, anger, and loss as they face the pending death of someone they love. For instance, families may feel guilty about not spending enough time with the resident due to the busyness of the season. Or they may feel overwhelmed at the thought of not being able to celebrate future holidays with their loved one.
The focus of this month's tip is two-fold:
  1. Reflecting on family concerns at the end of life, and
  2. Identifying strategies to provide support for families of dying residents.
In the most recent PERT class on communication, participants broke into small groups and created lists describing the most difficult things about working with families. Items on the lists included:


  • Unrealistic expectations, e.g.,
    • Non-acceptance
    • Never being able to satisfy family member
    • Nursing home care is never "good enough"
    • Not wanting to let go
    • Need more time (guilt)
    • Theirs is the only resident that matters
  • Anger, e.g.,
    • Targeting; demanding; denial; bullying
    • Blame for resident decline; blaming you for everything
    • Frustration and fear of their dying loved one — transference
    • Resentment; angry about placement
    • (Forgetting) that staff have feelings too
    • Lack of caring for other residents
    • Intolerance for other cultures
    • Conflict within the family
  • Decisionmaking, e.g.,
    • Not willing to accept resident's wishes
    • Not respecting advance directives
    • Families wanting to change advanced directives
    • Not agreeing with plan of care
    • DPOA not local and other family members present
    • Being caught in the middle


These are powerful statements that highlight the challenges faced by care providers. There are many factors that influence family dynamics and contribute to behaviors such as those listed above. Communication patterns, cultural influences, family secrets, and external stressors are only a few of the issues that affect family coping skills. At the end of life, one framework in which to begin to understand family behavior is that of anticipatory grieving. Anticipatory grief is often an unconscious process.1 Both the resident and family members may experience feelings of sorrow and pain in anticipation of the finality of death. Expressions of this and other types of grief can sometimes manifest in difficult ways, such as with angry outbursts and/or inflexible attitudes. Anticipatory grief may cause high levels of stress and can intensify normal family dynamics, both positive and negative.

To better understand anticipatory grief, Dr. Therese Rando described a series of tasks that family members must confront when their loved one is dying.2 These tasks, while necessary, are very difficult to achieve because they require a family member to work on different goals at the same time. For example:


Task One Task Two
Holding on to the resident ...while letting go
Increasing attachment and connection to the resident ...while starting to detach in anticipation of the resident's future absence
Remaining involved with the resident ...while separating
Planning for life after the resident's death ...while not wanting to betray the resident by actually considering life without him/her
Communicating feelings to the resident ...while not wanting to make the resident feel guilty for dying, or bound to this world when she/he is nearing death
Balancing support for the resident's increased dependency ...while trying to give the resident as much independence as possible
Actively changing family roles and responsibilities ...while not wanting to do anything that causes more losses for the resident
Taking care of the resident's needs ...while taking care of their own needs
Feeling the full intensity of anticipatory grief ...while not becoming overwhelmed
Focusing on the loved one as a living person ...while always remembering that the loved one is dying


It may help to bear in mind that these are some of the tasks on which family members are working (at times unknowingly), as you try to make sense of their behaviors.

What are some strategies for providing support to family members of dying residents? Research suggests that information and emotional support are what families need most.3 For example, you can:
  • Use your skills of patience, active listening, and encouragement to allow family members to express their concerns and identify their needs.
  • Develop simple habits such as routinely introducing yourself and your role to both the resident and family members.
  • Remember to ask if there is anything you can do for the resident or family member before you leave the room.
  • Ask about learning needs, for instance, "is there anything you would like more information about related to your mother's care?"
  • Validate the family member's contributions to the resident's comfort and affirm their overall commitment to their loved one.3
  • Try not to become defensive when anger is displaced toward you. Instead, acknowledge the family member's current feelings and ask what is needed to help improve the situation.
In these ways, you will begin to establish trust and rapport with the family. If you need further assistance, ask other team members such as social workers or spiritual care providers to offer support and assist with interventions.

Not all interactions with families are difficult. In the communication workshop mentioned earlier, Marty Richards suggested participants also identify the joys of working with families. Consider cutting out the following lists and posting them where you can be reminded of the many positive aspects of working with families at this significant stage of life.


  • Comfort, e.g.,
    • Providing physical comfort
    • Seeing family and resident connecting now when they had problems in the past; reconciliation
    • Get to see the resident's resilience, will to live
    • Seeing that last act of love when families let their loved ones go
    • Witnessing the love for a family member
    • Being able to facilitate quality time for resident with their family
    • Satisfaction of knowing that you made a difference in their experience
  • Affirmations, e.g.,
    • Hearing "thank you" and being appreciated
    • Feeling good about the job you're doing
    • Having family recognize your care is better than a hospital
    • When family acknowledges good care
    • When families come back and say "thank you"
    • (When you're) recognized at the funeral as the person who took care of their family member
  • Trust, e.g.,
    • Getting to know about who the resident was
    • Establishing trust with family; having someone put trust in you
    • Family becoming part of the team, actively participating
    • Sharing stories and thoughts as though you're a friend
    • When you make a little mistake and families say it's okay, because they know you care about their loved one
    • (When) families respect you to do your job
    • (When families) invite you to stay the last minutes of the resident's life
    • Being able to share with family what our day was like
  • Last but perhaps not least, another joy of working with families...COOKIES!


Do you have other thoughts about the joys and challenges of working with the families of dying residents? If so, please contact the PERT Program. We'll add your suggestions to the website.



References


  1. Corless IB. Bereavement. In: Ferrell B, Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press; 2001:352-361.
  2. Rando TA. Understanding and facilitating anticipatory grief in the loved ones of the dying. In: Rando TA, ed. Loss and Anticipatory Grief. Lexington, MA: Lexington Books; 1986.
  3. Ferrell BR. Emotional problems in palliative care: the family. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine. 2nd ed. Oxford: Oxford University Press; 1998:909-918.