This study presents data on a large cohort of NH residents with advanced dementia who died in a NH located in a large region of northern Italy. Differently from other studies, in which one-third of NH residents were hospitalized in the last month of life and the rate of death in hospital was almost 66%,19–20 the vast majority of our residents died in NH: only 4.7% of them were admitted to hospital or sent to the emergency department. This low figure may be considered positive, as hospitalization is of limited clinical benefit, and for advanced dementia patients it is considered aggressive.21 The availability of a full-time physician, and the fact that all NHs that participated in the present analysis are skilled NHs, may account for this result.
In general, although the care received by NH residents with advanced dementia in the last 7 days of life showed ample space for improvement, it also showed a preference for non-aggressive treatment. Sixty days before death, the vast majority of NH residents (78.4%) were fed only by mouth, but, as expected, that number decreased to nearly one in five (20%) the 7 days before death. Overall, in the last 7 days of life one-third of NH residents received palliative-oriented nutrition. It is broadly acknowledged that tube feeding in people with advanced dementia is useless, and even harmful, and that possible symptoms of dehydration can be effectively treated with small amounts of fluids (by mouth or by subcutaneous fluids administration) with good oral care.22 Nevertheless, relatives often ask for substantial nutrition and hydration.23 The limited use of subcutaneous fluids administration could be ascribed to a lack of knowledgeof this technique on the part of NH staff.24
The figures we report related to feeding tubes, namely the number of patients who died with a feeding tube in place, are higher than those reported in a Dutch25 and a US study, which showed a decrease in tube feeding over 15 years (from 11.7% in 2000 to 5.7% in 2014).26 Nevertheless, our results reflect a substantial positive trend when compared with the findings of a previous study (tube feeding 21.0% vs tube feeding and parenteral nutrition 16.6%; intravenous hydration 66% vs 48.4%) carried out in 2005 in a smaller sample of NHs in the same region.5 The same trend toward a less aggressive approach is shown by the decreased of the use intravenous fluid administration (from 67% to nearly 40%).5 Further positive findings concern the use of drugs, with the increased use of opioids (from 4.9% at baseline27 to 34.2% in the last week of life) and acetaminophen (from 4.5%27 to 7.6%); the low rate of blood samples taken (less than 2 patients out of 10); and the low rate of other invasive treatments/interventions.
Some aspects still require closer scrutiny and improvement, in particular clinical factors. Inappropriate prescriptions,28–29 such as anticoagulants/antiplatelets and anti-arrhythmics classes I-III, continue to be used. Diuretics, beta-blocking agents, antipsychotics, and antibiotics, even if considered “sometimes appropriate”, seem to be overly prescribed in the last 7 days of life; (hyoscine, steroids, and antacids may have been prescribed as symptomatics). There was also an overuse of procedures like intravenous catheter placement and an underuse of subcutaneous fluids administration.
The acknowledgement of the worsening of resident’s conditions was reported in the clinical records of 57% of NH residents a few days before death (median 4), but only 21 of these residents had a care plan drawn up. Lastly, some totally unjustifiable resuscitation attempts were carried out (14.5%, mostly with drugs). The trajectories of decline in persons with dementia are uncertain,30 therefore it is not easy to assess when a resident is approaching death. If acknowledgement of the proximity of death takes place only when a resident’s health conditions takes a drastic downturn,31 the opportunities to provide palliative care and hospice referral decrease.32 The difficulty of defining terminality, and of reliably estimating survival in people with advanced dementia requires structured investments to produce effective tools to identify and evaluate these factors.33 These findings also show the need to improve the knowledge of NH staff on these issues,14 particularly the physicians’, who are still ultimately responsible and accountable for the care, and overall, the urgency placed on national regulatory bodies and international scientific boards to produce up-to-date, widely accepted guidelines on the pharmacological approach to take with patients with dementia who are at the end of their life.6, 28
Critical decisions also require closer scrutiny and improvement. One of the most disappointing findings was the extremely low presence of ADs, whether they were self-written or communicated by relatives, the poor attitude toward implementing advance care plans, and the scarcity of guardians and/or surrogates. In Italy, the legal representative must be appointed by a magistrate, generally at the request of the health care provider, such as general practitioners and/or the NH doctor, which is not always a fast procedure. This may explain the scarcity of DNR and/or DNH orders in our study (overall 8 NH residents) and even the use of palliative pharmacological sedation. DNR and DNH orders are far more common in other European countries: 2.4% in our study, but 21.0% in Holland,34 and 60% in the US.35
Family involvement decisions were documented in only 86 clinical records and a recent study reported that most decisions are first taken by the physicians and only later communicated to relatives.13 The low prevalence of advance care planning suggests the tendency to avoid addressing the issue with family36 and would need investments for improvement. Advance care planning implies the involvement of family, in what have been called “expectation conversations”.37 Only 3.4% of NH residents were involved in conversations on desired end-of-life care in the van der Voot et al. study34 (although more than 60% were cognitively competent at admission), and even if NH staff say they are available to speak with NH residents’ relatives about death and dying when they are “terminal”,36 systematic, periodic conversations with families is a crucial instrument to reducing the NH staff’s uncertainty in clinical decision-making and to improve the family’s perceptions of quality of care in NHs.37–38
Critical decisions may affect the time of death, the place of death,31 and the way a person will live her/his last days. If a patient is incapacitated and there is no surrogate and/or ADs, the ultimate responsibility for treatment decisions falls on the physician, whose decisions may be affected by several factors, such as the context (setting and culture),39 personal and societal values and constraints, and medical training that is overly focused on curing.13, 40 A framework that shares this planning with the family may reduce the temptation to lean on defensive medicine, which may be partially responsible for resuscitation attempts, placement of feeding tubes,23 the drawing of blood samples, the avoidance of writing DNR/DNH orders, etc. This implies that, in spite of the spread and seeming acceptance of the principles and methods of palliative care, at least in NHs, prejudices and fears persist.