- Mrs McCrory is a 94-year old lady with early dementia who lives in a nursing home. Widowed. She presented with a stroke 3 weeks ago that led to dysphagia, dysphasia and right arm weakness.
- She has been NG fed for the last 3 weeks but has not tolerated the NG tube well. She has repeatedly pulled the tube out and finds it distressing to have it reinserted. It is not clear whether this is her way of saying that she no longer wants to be treated or whether it’s because the tube is uncomfortable. She does not attempt to swallow when given teaspoons of soft food.
- Prior to this stroke and her onset of dementia she had always maintained that she would not like to have treatment to prolong her life if she was going to be dependent and would prefer to die.
- She can answer yes/no to questions but these are not consistent.
- You feel that repeated attempts at inserting an NG tube (or PEG tube) would not be in her best interests and against her previously expressed wishes.
- The family have not expressed any views about preferred place of death, but you also want to discuss whether to let her go back to her nursing home. Daughter lives locally and visits often, her son works away and sees his mother about twice a year.
Meeting with doctor, nurse and daughter. The multidisciplinary team have all met and are in agreement that stopping NG feeding would be appropriate. Sometimes getting a second consultant opinion can be helpful if there is any doubt within the team or if the family disagree. There was consensus amongst the team and so a second opinion has not been sought-but the doctor is prepared to offer this if the family seem uncertain.
The following case study video contains interactive elements. If you are having issues with opening the interactive video, please follow one of the alternative video links below. The patient in this case is fictional but is based on real cases.
1:11 It’s often difficult to determine whether tubes are pulled out because of discomfort or because the person is saying that she does not want to be treated. Judgement is needed in individual cases and the decision about whether artificial feeding should continue should take into account other factors too.
1:13 Families are often worried about loved ones ‘starving to death’. It is important to reassure that other forms of nutrition can be given but that close to the end of life the need for this lessens.
1:19 As the process of dying continues the body does not need the same amount of fluid and usually cannot cope with extra fluids given through a drip into a vein. Occasionally we give some extra fluid through a small tube under the skin, if this is needed to keep the person comfortable. Extra fluids can start to build up in the lungs as the person deteriorates and makes their breathing more difficult. If this happens, any drip or feeding being given through a tube is stopped because it is no longer helping and may be harmful. Please see earlier module about ‘feeding at risk’. However, for this lady it is unlikely that she will be able to swallow soft food.
1:57 Often the transition from NG feeding and ‘active’ treatment to moving to stopping NG feeding and giving no fluids can seem a very big transition. Some families may feel more comfortable with smaller changes in management and may prefer that fluids are continued at least for a few days. Later conversations can address whether to continue with fluids.
2:17 ALWAYS ask about place of death. Family may well be thinking about this and if staff don’t ask then families are often too reticent to ask. See Impact of a clinical pathway on end-of-life care following stroke: a mixed methods study.
Cowey E1, Smith LN2, Stott DJ3, McAlpine CH4, Mead GE5, Barber M6, Walters M3.
2:32 Note the use of the term ‘die’. Generally it is better to use this term than euphemisms such as ‘pass away’.
3:14 Note that some staff would feel more comfortable not actively removing the tube but waiting until it is pulled out by the patient and then not replacing it. The difficulty with the second approach is that if the tube remains in situ for longer than expected (whilst waiting for it to be pulled out) the family may get mixed messages about what the longer term goal of care is.
3:42 It’s very difficult to predict prognosis. Some people with stroke can survive for up to six weeks without feeding. Families generally do want answers to this question but are aware that it’s difficult to predict with any degree of certainty. Remember to be explicit about what treatments will be given and what will not.
4:14 Note that Cheyne Stokes respiration can occur in severe strokes and it isn’t always a sign of imminent death.
Reference: EC4H Talking about deteriorating health, dying and what matters Boyd.K
4:39 If a family pay a compliment, acknowledge this and ensure that the rest of the team is told. Ideally, one could have checked in advance whether the nursing home can give subcutaneous fluids before having the conversation with the daughter. However, in practice it’s hard to know how the conversation may develop and discussions with the nursing home may not be needed, particularly if the daughter feels that dying in hospital would be a better option. When discussing discharging the patient home to die, it is crucial to ensure that sufficient practical support is arranged. If you think the person is very close to dying and will not survive the journey, this should be discussed with the family. Remember to ask about any spiritual support which may be needed.
- A discussion of the practicalities of discharge back to a nursing home to die. The nurses’ role here is crucial. Note that she discusses the practical steps needed to facilitate a discharge.
Page last reviewed: 16 Jan 2023
