Areas of Potential Support and Intervention for People with Chronic Illness/Life-Limiting Illness/ Life-Threatening Illness/Palliative Care Needs

Illness and/or the need for palliative care, can be challenging for all involved. Aspects of holistic care needs are outlined below. If the ill child, young person, adult or their family members require assistance in addressing the following areas, this would be done at the pace and depth determined by them, according to each person’s developmental age, maturity and individuality. It is important to note that the areas are not linear, and may become more or less significant during the changing phases of the illness.

Research (and my experience) shows that all children, young people and adults develop awareness that they may die, when faced with a life-limiting or life-threatening illness, and eventual palliative care, and therefore have many significant psychological, emotional, social and spiritual needs that require caring and practical support. 

Area 1: Effective support from practitioners and caregivers

Potential issues/areas of possible need for support:

  • Family interactions, cultural issues
  • The involvement of numerous practitioners
  • Conflict or difficulties with practitioners
  • Changes in family and practitioner attitudes/behaviour/boundaries towards the ill person
  • Information-sharing issues, lack of information
  • Differing messages about the condition and the future
  • Ill person’s involvement in decisions, including decisions re medical intervention

My (Psychologist’s) role/ supportive intervention may be to:

  • Advocate the ill person’s needs within the family and with practitioners
  • Provide mediation with or education of practitioners
  • Encourage the reaching of a consensus re direction of care
  • Encourage the continuity of usual behaviour and boundaries towards the ill person
  • Encourage the sharing of open, honest and clear information between family, ill person and practitioners
  • Encourage the ill person’s involvement in decisions about daily care, short and long term medical decisions and interventions

Area 2: Preservation of relationships

Potential issues/areas of possible need for support:

  • Relationships deteriorating or being lost
  • The awkwardness or disengagement of others
  • Experiencing fewer meaningful encounters
  • Less engagement in usual activities
  • Experiencing “social death” before actual death
  • Loneliness and withdrawal

My (Psychologist’s) role/ supportive intervention may be to:

  • Encourage the ill person and their family to continue with their usual activities as much as possible
  • Encourage family relationships and friendships to continue and deepen 
  • Practise and promote normality
  • Treat emotional issues

Area 3: Preservation of self-worth

Potential issues/areas of possible need for support:

  • Physical deterioration, new disabilities
  • Reduced esteem and self-image
  • The ill person’s inability to care for themselves
  • Modesty and loss of dignity
  • Sense of inadequacy due to reduced functioning
  • Being treated as an object
  • Sense of stigma of illness/impending death
  • Perceived lack of achievement
  • Perceived lack of purpose
  • Lack of autonomy

My (Psychologist’s) role/ supportive intervention may be to:

  • Provide practical input  
  • Encourage achievement - promote ways in which the ill person can achieve and feel good about themselves
  • Promote social interaction with peers and family
  • Acknowledge prognosis and explore attitudes to illness/death
  • Encourage meaningful use of time/remaining time
  • Include the ill person in decision-making, provide choices
  • Encourage respect, control and choice over modesty and dignity issues
  • Respect tradition/beliefs/value systems and the influence they have on all aspects of care
  • Explore possible use of charities such as Make a Wish and CanTeen (for young people)
  • Provide therapeutic support 

Area 4: Exploration and expression of feelings

Potential issues/areas of possible need for support:

  • Internalised fears, guilt
  • Sadness, grief, ‘anticipatory grief’, depression
  • Stress, anxiety
  • Behavioural issues
  • Lack of understanding
  • Living with uncertainty
  • Lack of boundaries
  • Unresolved issues and concerns
  • Isolation

My (Psychologist’s) role/ supportive intervention may be to:

  • Ask caring questions, listen, and acknowledge feelings that are expressed
  • Provide counselling and therapy
  • Acknowledge prognosis and explore the person’s ideas about illness/death
  • Treat stress, anxiety, depression, and other mental health issues
  • Address fantasies, fears, misunderstandings and limiting beliefs
  • Encourage expression of feelings between the ill person and family members
  • Advocate the ill person’s needs within their family
  • Suggest practical solutions to some issues where possible

Area 5: Preparation for death and saying goodbye

NB: Especially important for palliative care patients and their families.

Potential issues/areas of possible need for support:

  • The sense of time running out
  • The need to ‘put house in order’, or take care of unfinished business
  • Goodbyes and ‘endings’
  • Dying ‘appropriately’ for the ill person
  • The ill person’s involvement in the planning of their own funeral if they wish
  • Family members experiencing difficulties with this area

My (Psychologist’s) role/ supportive intervention may be to:

  • Help the ill person and family members achieve their needs and wishes quickly
  • Give the opportunity to explore and take actions that will resolve outstanding personal issues
  • Provide assistance with practical solutions
  • Provide therapeutic support   
  • Promote or facilitate the ill person’s communication, goodbyes and good ‘endings’ with significant family members, friends, pets, possessions and special places
  • Encourage/assist the ill person in creating a life book, memory box, writing letters or drawing pictures for family members and other special people
  • Promote and respect the ill person’s input re medical intervention and decisions around how and where they would like to die (as much as can be planned)
  • Promote the ill person’s involvement in planning their funeral if they wish, eg. choosing music, writing a poem, and the involvement of family/siblings etc
  • Support the ill person’s wishes re how and in what ways they would like to be remembered
  • Support carers/family members with their needs during this significant phase

Area 6: Finding meaning in life and death

NB: Especially important for palliative care patients and their families.

Potential issues/areas of possible need for support:

  • Physical suffering
  • Emotional suffering
  • Spiritual pain
  • Spiritual needs and values
  • Religious and philosophical beliefs
  • Beliefs and values of family members and significant others
  • Life-review process - integrity or despair
  • The death of friends/others known from the hospital or hospice
  • Sense of purpose

My (Psychologist’s) role/ supportive intervention may be to:

  • Advocate for the management of physical pain and symptoms in every way possible
  • Explore how the ill person and family members understand their situation
  • Encourage the ill person and family members to express their feelings and emotions
  • Explore attitudes to suffering, emotions, illness and death
  • Challenge fantasies, fears, misunderstandings and limiting beliefs
  • Help the ill person and family members resolve issues where possible
  • Encourage the ill person’s expression of their personal spirituality, spiritual needs and values
  • Respect tradition/beliefs/value systems and the influence they may have on all aspects of care
  • Facilitate visits by important members of the ill person’s culture or religion, if requested
  • Protect the ill person from the proselytising of others
  • Help family members respect the ill person’s beliefs, if they appear to be different or conflict
  • Encourage the ill person to reminisce with family members and friends
  • Enable the ill person to discover and articulate memories, experiences and ideas which are meaningful to them
  • Encourage the ill person to reflect on their achievements, and the value, significance and purpose of their life
  • Help the ill person feel valued and dignified
  • Encourage the ill person to access nurturing and healing experiences and environments
  • Provide advocacy on behalf of the ill person within their family, and within the multi-disciplinary team
  • Support the ill person during and following encounters with, or knowledge of, the deterioration or death of others known to them at the hospital/hospice/support groups/community centres, especially friends
  • Support family members in relation to the above

Life-limiting and life-threatening conditions and possible/potential death are distressing and challenging for the ill-people involved and their families. It is important to remember, however, that it is a privilege to have the time to explore and address all aspects of an illness in a holistic way, and to have the time to fully acknowledge and say ‘goodbye’ to the ones we love when they must go on.

© Sharon Rasco, Psychologist, Sydney, Australia. Informed by the wonderful work of Bluebond-Langner, Doka, Kubler-Ross, Worden and many others, and my own experience in this field.