Symptom management

The management of pain and symptom is very important in end of life care. To patients, regardless of care setting, the decline in their health can be very frightening and they look to their carers to help them through this period. All nursing staff who care for dying patients have a responsibility to ensure they have enough knowledge and skills to manage the key symptoms that may occur in the last few days of life.

This resource covers a broad range of topics, so cannot cover all aspects of symptom control. However you need to be aware of where to access your local guidance on drugs details, etc.

Listed below are the common symptoms that may occur in the last year of life:

  • pain
  • fatigue
  • frustration
  • difficulty breathing
  • difficulty swallowing
  • lack of appetite
  • constipation
  • hope and hopelessness
  • confusion.

The most common symptoms in the last few days of life are:

  • pain
  • agitation
  • nausea and vomiting
  • breathlessness
  • excessive respiratory secretions.

The principles of symptom management:

  • accurate assessment of need in the physical, psychological, social and spiritual domains is crucial if distressing symptoms are to be managed effectively
  • emphasis is on keeping the patient comfortable and not cure
  • symptoms are multidimensional, therefore management will be through a multi-professional team approach, so communication between teams is vital
  • involve the patient in decision making
  • work with the person and those close to them to ensure they understand the treatment
  • record keeping is vital as the treatment can be complex.

Anxiety

Experts point out that it’s perfectly natural to feel scared, sad, and anxious about death and the dying process. Most anxiety near death can result from not talking because people are facing something that they’ve never had to deal with before. A lot of anxiety comes from just not knowing what lies ahead and feeling frightened and isolated. But you and the rest of the palliative team are there to support the person and those they care about, we are their safety net.

This often involves educating not only the person who’s facing the diagnosis but also relatives and friends about what they can expect. A lot of anxiety and negative emotions associated with a life-threatening illness come from feeling helpless and not knowing what is happening.

Anxiety can exacerbate the severity of symptoms and may also cause sleep disturbance. Talking through any questions or helping the person to find the answers to questions can help alleviate some of the stress.

Breathlessness

One of the most distressing and common symptoms of a patient with a life-limiting illness is breathlessness, and it may feature in 70% of patients in the last few weeks life.

Patients may describe it as:

“It feels like I’m going to take my last breath”
“It feels like I’m suffocating and its very frightening”

Supporting your patient:

  • help the person to find a position that is more comfortable
  • use a fan (stimulates branches of the trigeminal nerve)
  • make sure there is adequate room ventilation
  • try not to ask questions that require long answers; use closed questions
  • aromatherapy may help
  • breathing exercises (will need to involve a physiotherapist)
  • medication may be prescribed to help.

Co-morbidities

Often patients will have more than one chronic condition which may complicate the assessment process, however, as the person declines, ongoing assessment is imperative to manage the transition from managing the condition and maintaining well-being to managing the dying phase. For example, someone who has lived for many years with chronic obstructive pulmonary disease and heart failure is at risk of having a very difficult time in the last few days of life by being exposed to inappropriate medical interventions that will not be of any benefit to them. It is beneficial for the different teams involved in the patient’s care to communicate with each other and use prognostic indicator tools to support advance care planning.

Constipation

Constipation is very common in patients with life limiting conditions and can be caused by:

  • use of opioids
  • reduced mobility
  • reduced appetite and fluid intake
  • dehydration and fluid loss such as vomiting
  • effects of disease.

Although constipation is usually a minor symptom it can have serious effects on quality of life and can worsen other symptoms.

Support and care:

  • assessment of your patient, such as bowel routines
  • your patient’s mouth should be checked to rule out anything that would inhibit eating and drinking, such as thrush or mouth ulcers
  • pain when going to the toilet
  • ensuring your patient can get to the toilet
  • ensuring there is a commode if it is required.

Management could include:

  • laxatives can be used to help alleviate the problem. Refer to your local clinical guidelines
  • increased fluids intake, although this may be difficult when close to death as the patient may not be able to swallow, they may be fearful of incontinence or being sick. Little and often, and try to offer fruit juice rather than just water
  • exercise, although not always an option, if possible encourage mobility with your patient
  • fibre, again it might not be possible to provide your patient with fibre, because of the inability to swallow, if it is possible then purees and fruit juices could be given.

Nausea

Over half of patients with advanced life limiting illnesses will experience nausea and vomiting.

Causes:

  • gastronintestinal, such as squashed stomach, intestinal obstruction, enlarged liver
  • ear, infection, vertigo
  • morphine and other medication can cause nausea and vomiting.

Supporting your patient:

  • assess their condition; have they lost weight? Are they dehydrated? How much vomit is there?
  • treat the cause, so look for why they are being sick
  • reassure them and their relatives, it can be quite distressing to be sick all the time. If it is because they are having morphine or other opioids, then reassure them that it may not last
  • regular mouth care
  • give them ice to suck if drinking makes the vomiting worse
  • avoid strong smells, so don’t wear strong perfume
  • medication, check your local guidance on the use of antiemetics
  • keep accurate records of the vomiting and nausea episodes.

Pain

“Pain is whatever the experiencing person says it is, and exists whenever he says it does” – Margo McCaffery (Pain: Clinical manual for nursing practice)

Pain is complex and not just about a physical sensation. Each individual has their own experience of pain and it can be described in a number of ways. Nursing staff play a key role in ensuring that patient’s pain is assessed and managed effectively. They have a duty to ensure that at no time the person is left to die in pain.

Causes

  • nerve pain
  • bone Pain
  • soft tissue or visceral pain
  • referred pain
  • phantom pain.

Supporting your patient:

  • assess them, use your senses even before you start asking them questions. Do they look in pain? Do they sound in pain? Smells could indicate that they are in pain, for example, offensive smells from urine or wounds. If you touch them do they flinch?
  • ask them the following: where is the pain? How long does it last? Can you describe the pain?
  • remember that sometimes patients will not tell you they are in pain, this may be because they feel they’re being a nuisance, have a stiff upper link, fear that the disease may have progressed or even fear of medication like morphine.

Management

Physician competency in pain management is essential to enable patients with advanced illness and those at the end of life to retain hope that they will not have to die in pain, and that dying does not have to be associated with unrelieved suffering. (- End of Life Care Practical Guide p181)

Believing the patient, accepting the patient’s pain for what it is, and abstaining from super-imposing one’s own biases upon the patient are the first steps to effective pain management. With those steps accomplished, methodical assessment of the cause of the pain will lead the clinician, with the help of the patient, family, and other members of the end of life care team, to develop the plan of care and interventions that are necessary for effective treatment. (- End of Life Care Practical Guide p131)

The Scottish Palliative Care Guidelines can give you more information.

Symptom control requires a high level of skill but what all should know is how to access the guidance that will be available locally.

Helpful links:

Palliative Care Guidelines

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