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Key Questions - Palliative care

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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.

Helpful guidelines:

  • 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?

Helpful guidance:

  • 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?

Helpful guidelines:

  • 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.

Helpful guidance:

  • 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.

Suggested reading

Becker, R., Gamlin, R. (2004) Fundamental Aspects of Palliative Care Nursing. Salisbury: Quay Books.

Useful websites

The National Council for Palliative Care
ncpc.org.uk

Scottish Intercollegiate Guidelines Network - pain control
sign.ac.uk/guidelines/fulltext/44

Breaking Bad News
breakingbadnews.co.uk/index.asp

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Readers' comments (1)

  • this artical is very intersting and help me enhancing my knowledge about palliative care.

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