End of life care

Patient voices: Care of the dying?

There are many preconceptions and stereotypes surrounding hospice care. Watch the video here.

Depending on the area of health care in which you work, you may be involved in caring for someone towards the end of his or her life. This can happen in hospitals, hospices, care homes or people’s own homes. We usually consider end of life as the last few days and hours of life, but the patient may have been ill and in need of specialist care – palliative care – for some months or even years prior to this period.

People’s needs at this time will vary very much. There will be physical needs for food and fluids, personal hygiene and the need to maintain comfort. There will be psychological needs, with the person possibly frightened or, perhaps, resigned to what awaits him or her. There will be social needs, with the person perhaps worrying about what will happen to his or her family and how any assets will be dealt with. And there may be spiritual needs, with the person either seeking religious or non-religious spiritual comfort.

Pain is not always present at end of life, but can cause great distress for the patient and those around him or her if it is. The patient may have long-term conditions (such as arthritis) that cause pain in addition to that caused by his or her terminal illness. The team will carefully assess the best combination of medications to keep him or her as comfortable as possible. As a health care assistant, you can support this effort by reporting rapidly any signs that the patient is in pain. He or she may not be able to tell you directly, but watch for signs such as the person:

  • becoming restless or attempting to hold or rub a particular part of his or her body
  • grimacing or making moaning sounds
  • becoming agitated, irritable or even aggressive
  • sweating and his or her heart and breathing rate increasing
  • being unable to rest or sleep.

There are many tools available that can assist you, please check with your employer. Try to be as specific as you can when you report such pain. This will help the team enormously to make the right decision on how to respond. For instance, try to specify:

  • where you think the pain is located (perhaps if the patient is rubbing or holding)
  • when it started
  • the effect it is having on him or her – restlessness, moaning, sweating, increased pulse or breathing rate and lack of sleep, for instance.

Skills for Health, Health Education England and Skills for Care have developed a new End of Life Care framework which will provide personalised care to terminal patients and their families. See: End of Life Care framework.

Many organisations now use pain assessment charts on which you can record your observations on the patient’s pain and on the effect of any remedies used to try and deal with it. If your organisation has such a chart, it’s important that you receive training in how to use it properly and how you should report your concerns – if you haven’t already done so, speak to you manager or supervisor about this. And remember, if you have even the slightest concern that a patient is in pain or that his or her existing pain is worsening, report to the registered person in charge first, and record on the chart later.

If you have received training, you may be involved in administering medicines to combat the pain (see Supporting medication administration). But medicines are not the only way to help someone in pain – gently repositioning his or her limbs, cooling the face with a moist cloth or even just holding hands can bring comfort and some respite.

Promoting dignity as someone’s life draws to a close means:

  • respecting the person’s right to have choice in how his or her care is delivered
  • caring competently for his or her physical needs (such as personal and oral hygiene) in a gentle, compassionate and respectful way
  • ensuring that pain, discomfort and other unpleasant symptoms are recognised quickly, reported and addressed
  • listening with empathy and compassion to the person and offering comforting words
  • supporting the person’s family and loved ones with compassion
  • respecting the person’s religious and/or spiritual beliefs
  • ensuring that everything you do complies with any advanced statement that the patient may have made – an advance statement enables people to make choices and decisions about their future care in case a time comes when they aren’t able to make these decisions for themselves because of, for example, advanced dementia (you can read more about advanced statements at the Alzheimer’s Society website.)

This means that we have to draw on all the communication and relationship-building skills we have and maintain them in the face of what can be a very challenging situation not only for the person and the family, but also for you and the team. But by placing the person’s interests first, by practising the principles of person-centred care and by promoting dignity every time you care for him or her, you’ll be making a great contribution to achieving a peaceful and comfortable death and to helping the person ‘live and die well’.

All four UK countries have end-of-life care strategies in place that you might want to look at.

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