Robert Becker, MSc, Dip N, RMN, RGN Cert Ed (Fe), FETC (C&G 730), is senior lecturer in palliative care, Staffordshire University and Severn Hospice, Shropshire.
I have never encountered death before – how do I behave and what are the priorities in care?
Being at the bedside of someone who is dying can have a profound impact on nurses and can shape professional values, attitudes and beliefs for the future.
The supporting principles are:
- Patient and family participation where possible;
- Adopt a holistic and collaborative multidisciplinary approach;
- Use of appropriate medications tailored to each person given regularly to relieve and prevent symptoms;
- Continued regular review of all care over the 24-hour period;
- Access and early referral to specialist services for patient and family support if needed.
- SUPPORT: Tell staff that this is your first experience and ask for help;
- SENSITIVE: Be aware that this is a unique occasion and you may feel vulnerable;
- TALK: Find a trusted person or mentor to talk to about the experience. This is important so that good practice can be valued and potential issues addressed;
- TIME: Allow time to reflect on the significance of this event and how it has shaped practice.
I don’t know what to say to patients and relatives when they ask sensitive questions – how should I deal with this?
There are no easy answers to life’s most difficult questions, but in a palliative care context there are some useful techniques that can help.
The supporting principles are:
- Encourage the expression of fears, doubts and questions;
- Use skills of active listening and empathy to communicate understanding;
- Try not to shy away from appropriate physical touch and reassurance;
- Learn to respect a silence and do not always feel the need to fill it;
- Avoid giving more information than the patient asks for;
- When asked a direct question, eventually it must be answered directly. Avoidance will create mistrust and suspicion;
- Do not expect to have all the answers; often there are none to profound questions
Questions that may help facilitate a conversation:
- Would you like to talk?
- In the time that’s left, what is important to you?
- Is there anything I can say/do to help?
- How do you feel now you have had a chance to speak to the doctor?
- What do you really enjoy?
- Seek further information before responding to the question;
- Clarify the exact meaning of what is being asked;
- Decide on the best response;
- Invite questions;
- Check that the person has understood your response;
- Arrange for further information if necessary, from other members of the team.
What can I do when relatives request that their family member not be told a life-limiting diagnosis?
The collusion scenario is never easy to handle and there are several key questions that nurses need to ask:
- What does the patient know already?
- Does the patient want to know any more information?
- Does the patient need to know?
- Has the patient been given these choices?
- Would they like someone from their family to be with them?
- Have they worked it out already?
- Clause 3.1 of the NMC code of professional conduct (2004) clearly states that all patients and clients have a right to accurate, truthful information about their condition.
- The patient has primacy in law. A mentally competent patient has the right to determine who shall be informed about his or her medical condition. All rights of friends or family are subsidiary. If a patient decides not to share information, it cannot be countermanded at the family’s request.
Some of the staff I work with find it hard to relinquish life-preserving treatment even when it is clear the patient is dying. What can I do to help remedy this situation?
This area is one of the major challenges for nursing in non-specialist environments.
Supportive principles are:
- Clearly identify with the team that the person is near the end of their life and gain agreement on a palliative approach, ideally in consultation with the patient and family;
- Remember the simple ethical principle of ‘non-maleficence’, that is, do the patient no harm. The NMC Code of Conduct (2004) makes this quite explicit in clause 1.4 regarding duty of care.
- Discuss the rationale for the current treatment regime to ensure all staff understand the care priorities;
- Talk with the patient to explore issues raised;
- Reassess the level of pain, symptom control or anxiety about their health status;
- Review the management plan regularly;
- Remember the focus is on quality of life.
The medical staff I work with will not prescribe enough analgesia for patients in chronic pain for fear of hastening their death. What can I do to help?
The good news is that much can be done to relieve or help patients cope with their pain and suffering and nurses play a vital role in assessing, planning, delivering and evaluating pain management.
The principles of good pain control include:
- Think holistically and observe patients carefully. Do not wait for them to tell you they are in pain;
- Assess pain meticulously and repeatedly using recognised tools. Look for the nature of the pain, the site and the duration;
- Communicate all pain-related findings to the team;
- Monitor the effectiveness of the pain-relieving measures and review at least every 24 hours until a stable regime is established;
- Use individually titrated, regular analgesia so that the pain does not return;
- Set realistic goals with patients;
- Analgesic drugs alone will not relieve all pain. Compassion, empathy, understanding and diversion are essential complementary measures.
Becker, R., Gamlin, R. (2004) Fundamental Aspects of Palliative Care Nursing. Salisbury: Quay Books.