Living wills or advance statements record people's healthcare wishes in case they are unable to contribute to a decision concerning their health care in the future, either because of mental incapacity or because physical disability prevents communication.1 Elderly people are often in this position owing to illnesses such as dementia and strokes that cause dysphasia. The views of elderly North Americans on this subject are well documented, but there are no reports of the views of older people in England.2,3 This study aimed to determine the knowledge of elderly inpatients in the United Kingdom on living wills and their healthcare choices should they write such a will.
Participants, methods, and results
Seventy four out of 76 medical inpatients approached answered a questionnaire administered by one interviewer (RS) at two hospitals in London. All participants were aged over 65 and had a normal score on the abbreviated mental test. Ethical approval had been obtained.
The participants' mean age was 81 (range 66-97) years; 73 participants were white and one was Asian (lack of fluency in English precluded other eligible people). Most lived in independent housing (69; 93%), either alone (44; 64%) or with family members (25; 36%). One participant was wheelchair dependent; others could walk: 25 (34%) independently, 26 (35%) with sticks, 22 (30%) with a frame. Half received home help. Of 69 participants who completed the BASDEC depression profile, 11 had a score of 7 or above,4 suggesting depression.
Sixty one participants (82%; 95% confidence interval 72% to 90%) had not heard of living wills, advance directives, or advance statements. Of the 13 people who said they had heard of living wills, only four correctly defined them; most, as previously noted,3 thought that the term applied to financial arrangements after death.
Most people chose relatives as a healthcare proxy:12 (17%; 9% to 27%) chose their spouse and 45 (63%; 50% to 73%) chose other relatives; friends (n=4 (6%; 2% to 13%) and doctors (n=16 (22%; 13% to 34%) were also nominated. People were specific as to which family member they would wish consulted. Five of 17 people living with their spouse (29%; 10% to 56%) did not choose them as a healthcare proxy. They stated it was not fair to expect them to make these types of decisions; they would be too emotional to be rational and they would not make the decision the participant would have wanted. Seventeen (24%; 14% to 35%) had discussed issues surrounding medical care with their proposed healthcare proxies.
Our elderly participants found many disabilities unacceptable, stating that they preferred “comfort only” care, even if they might die, to active treatment (table). The single condition most feared was advanced dementia (n=56 (78%; 66% to 87%), and this became even less acceptable when combined with other disabilities. Least feared was being in a wheelchair (n=17 (24%; 14% to 35%). Women were less likely than men to request active treatment options: geometric mean (out of 27 disabilities) 3.2 for women, 6.5 for men; ratio difference=2.0 (1.1 to 3.8; P=0.04) after adjustment for age.
At the end stage of a terminal disease, 68 people (94%) said they would refuse surgery, 67 (93%) artificial feeding, 66 (92%) ventilation, 65 (90%) cardiopulmonary resuscitation, 62 (86%) subcutaneous or intravenous fluids, and 59 (82%) antibiotics.
Fifty participants (74%) expressed interest in writing a living will, most commonly because their views would be known (25; 34%) and to relieve the burden of decisions on their family (22; 30%). Women and men were equally interested in writing a living will.
Comment
Despite little previous knowledge of living wills, many older people were interested in the concept. Most elderly people have clear views on the issues raised in living wills, and 92% indicated when they would no longer wish their lives to be prolonged by medical interventions. A living will specially designed for elderly people may be appropriate and is being prepared.
Table.
Percentage of patients (n=74) who would not want active treatments for any additional illness (for example, pneumonia) if they had disabilities. The diagonal gives the percentage of participants preferring “comfort only” care should they have one of seven disabilities and the other results refer to a combination of two of them
| Disability | Unable to speak | In a wheelchair | Bed bound | Fed by percutaneous endoscopic gastrostomy | Advanced dementia | Blind | Doubly incontinent |
|---|---|---|---|---|---|---|---|
| Unable to speak | 52 | ||||||
| In a wheelchair | 64 | 24 | |||||
| Bed bound | 78 | NA | 58 | ||||
| Fed by percutaneous endoscopic gastrostomy | 77 | 74 | 81 | 57 | |||
| Advanced dementia | 90 | 83 | 92 | 90 | 78 | ||
| Blind | 82 | 78 | 82 | 79 | 88 | 44 | |
| Doubly incontinent | 82 | 76 | 81 | 79 | 89 | 82 | 53 |
NA=not applicable.
Acknowledgments
We thank Pete Sacares for the statistical analysis and help with manuscript revision, and the consultants in care of the elderly at Northwick Park hospital for allowing RS to interview their patients.
Editorial by Emanuel
Footnotes
Funding: None.
Competing interests: None declared.
References
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