COMMUNICATION AND SUPPORT IN END OF LIFE CARE

1. COMMUNICATION AND SUPPORT IN END OF LIFE CARE

2. OUTCOMES TO IDENTIFY THE MAIN AREAS OF COMMUNICATION NEED IN END OF LIFE CARE. TO RECOGNISE THE NEED TO BE SELF AWARE IN YOUR OWN COMMUNICATION WITH CLIENTS AND RELEVANT OTHERS. TO RESPOND APPROPRIATELY TO THE PATIENT’S NEEDS AND CONCERNS. TO EXPLORE WAYS OF SUPPORTING PEOPLE IN END OF LIFE CARE.

3. THE AREAS OF CONTACT • AWARENESS AND DIAGNOSIS. • LOOKING AT THE FUTURE. • EXPRESSING AND PLANNING FOR NEEDS. • TALKING WITH OTHERS. • COMING TO TERMS. • END OF LIFE ISSUES.

4. AWARENESS • This starts with what the patient experiences prior to investigation and contact with medical care. • Every patient has a story about this. What did they fear? How did they deal with it? How do the professionals handle the patient concerns? • Always ask how they feel and what their concerns and fears are. Give support and encouragement.

5. DIAGNOSIS • The diagnosis is often given the umbrella title of ‘Breaking Bad News’. • There are many reactions. Some may deny what they hear – it is their worst case scenario. Some feel vindicated. Most feel shocked. • There is no one way of doing this right. People should be told in a private and peaceful environment. Support should be available after the event.

6. BEING SELF AWARE • Talking about death and dying is not natural in our culture. It is difficult to face up to, uncomfortable and embarrassing. • We automatically think of our own experience or even our own mortality. This can affect how we perceive and how we respond to others. These issues need to be set to one side during our professional duties.

7. COMMUNICATION TIPS • Take an interest in your patient. • Listen to them carefully. • Encourage them to talk. • Give short bursts of information. • Reinforce what you say. • Look for heightened emotions. • Keep calm, whatever happens. • Give support.

8. LOOKING AT THE FUTURE • What if the patient does not want to face the future? • If they are not ready we cannot force them. We can only provide a safe environment for them to express their fears and uncertainties. • Try to agree some easily achievable goals for the day/week/month/year. • Be alert for spiritual concerns (meaning and value of life) • Be alert for emotions (e.g. anger)

9. PLANNING FOR NEEDS • The advanced care planning should always be in your mind, as this is an evolving document. • The discussion should widen to family, friends and carers when considering care planning for both present and future needs. They need to be prepared and supported.

10. CASE STUDY - 1 • MRS DOROTHY SPICE 82, breast cancer, liver metastases • Lives alone, niece some miles away • Very independent, full and varied life • Very breathless, wheezy • Rash on chest, morning headaches • Not wanting more hospital interventions or treatment How will you Start the Conversation? How far will you go in seeking information?

11. CASE STUDY Contd • Dorothy wants to die at home. • Her niece feels she should be in hospital. • Dorothy is now on Medication for pain and breathlessness. Carers are going in x4 per day. A hospital bed is being ordered, but Dorothy prefers an armchair. • Dorothy has agreed with her GP a DNACPR order. How would you discuss how her condition will progress and how that would affect her care?

12. COMING TO TERMS • The patient will go through the stages of loss. • Denial • Anger • Bargaining • Acceptance • (Kubler-Ross 1997) • This is the patient’s journey and they will travel at their own speed. They may get stuck in a particular place. Should be viewed as positions that can be held and released by the client. What matters is our responses

13. DENIAL • A protective coping strategy that puts off threatening and potentially destructive news. • OUR ACTIONS • Short bits of information they can use, and long periods of listening and acceptance on our part. • In this state joint care planning is difficult. Plan day to day. Denial protects from the threatening nature of reality

14. ANGER • Often in the form of florid emotion and directed at those who gave the news and bystanders. • Can also be shown through non co-operation and limited communication. • OUR ACTIONS • Give them space to express their feelings safely. Verbally, drawing, writing. Be accepting of any legitimate mode of expression. This is a stage of transition. Be calm & do not challenge. Anger often overlies pain. It can also adversely affect the quality of life for the patient and family.

15. BARGAINING • Usually a very brief stage. With some this is a spiritual barrier (who are they bargaining with?) • OUR ACTIONS • Enlist help from the patient’s spiritual advisor or call in a Chaplain. • Talk about their spiritual needs. Consider a spiritual assessment. • Use as a springboard for joint planning.

16. ACCEPTANCE • Not all patients reach this stage, but those that do are able to plan their future in the knowledge that they have reached the end of their life. They can face reality. • They are able to deal with their affairs (business and family). • In this state they are fully able to engage or not, in joint care planning. Accept that this may not be the patient’s goal.

17. USING EMPATHY • You may have had similar experiences as a friend or relative. This may have affected you in ways unknown. • This makes connecting with the person a little problematic. Remember to connect with their emotions, rather than you own. • Show an understanding of the issues and be a sounding board for their hopes and fears.

18. PSYCHOLOGICAL SUPPORT • Be aware that the patient’s mood may be low. Also that they may be depressed. Look out for – • Low mood • Poor sleep patterns • Lack of energy or interest • Negative thoughts or ideas • Loss of appetite • Use a depression inventory

19. DEALING WITH DEPRESSION • Involve the GP or patient’s medical practitioner. Medication may be necessary. • Consider the involvement of a clinical psychologist or member of the Mental Health Team. • If the patient is able, involve them in activities that can easily accomplished.

20. COPING STRATEGIES • It is always good to use what the patient is most familiar with. This includes place, person or object. • It is our relationship with the patient that gives them support and the ability to cope in strange environments.

21. SPIRITUAL CARE • The practice of spiritual care is about meeting people at the point of deepest need. • It is about not just ‘doing to’ but ‘being with’ them. • It is about our attitudes, behaviours and our personal qualities. • It is about treating spiritual needs with the same level of attention as physical needs.

22. WHAT SPIRITUALITY IS ABOUT • Hope and Strength • Trust • Meaning & Purpose • Forgiveness • Belief and Faith in self, others and for some a belief in a higher power. • People’s Values • Love & Relationships • Morality • Creativity and Self Expression

23. CONCLUSION • Communication, coping and spirituality are all part of relationship. • Caring is a relationship. • It is joining another in part of their journey. • As in any other relationship, there will be ups and downs, tears and perhaps laughter. • Don’t forget to care for the carer!