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. In contrast to previous 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%,21–22 the vast majority of our residents died in the NHs: only 4.7% of them were admitted to hospital or sent to the emergency department. This low figure may be considered positive, as hospitalization can be aggressive and of limited clinical benefit for people with advanced dementia.23 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 7 days before death showed room 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%) in the 7 days before death. Overall, one-third of NH residents received palliative-oriented nutrition in the 7 days before death. It is broadly acknowledged that tube feeding in people with advanced dementia is ineffective 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.24 Nevertheless, relatives often ask for substantial nutrition and hydration.25 The limited use of subcutaneous fluids administration in our study could be ascribed to a lack of knowledgeof this technique on the part of NH staff.26
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 Dutch27 and a US study, which showed a decrease in tube feeding over 15 years (from 11.7% in 2000 to 5.7% in 2014).28 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 was shown by the decreased use of intravenous fluid administration (from 67% to nearly 40%).6 Further positive findings from our study concern the use of drugs, with the increased use of opioids (from 4.9% at baseline29 to 34.2% in the 7 days before death) and acetaminophen (from 4.5%29 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. For example, the prescribing of inappropriate drugs,30–31 such as anticoagulants/antiplatelets and anti-arrhythmics classes I-III, continued in our study. Moreover, diuretics, beta-blocking agents, antipsychotics, and antibiotics, even if considered “sometimes appropriate”, seemed to be overly prescribed in the last 7 days before death (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 in place. Lastly, considering the residents’ advanced stage of dementia, some questionable resuscitation attempts were carried out (14.5%, mostly with drugs). The trajectories of decline in persons with dementia are uncertain;32 therefore it is not easy to assess when a resident is approaching death. If the proximity of death is only acknowledged when a resident’s health condition rapidly declines,33 fewer opportunities are left to provide palliative care and hospice referral.34 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.35 These findings also show the need to improve the knowledge of NH staff, including physicians, on these issues.16 This need is reflected in the urgency placed on national regulatory bodies and international scientific boards to produce up-to-date, widely accepted guidelines on the appropriate pharmacological approach to take in patients with dementia who are at the end of their life.7, 30
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, 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 (e.g., general practitioner and/or the NH doctor), and this procedure can take some time. 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, compared to 21.0% in Holland36 and 60% in the US.36
Family involvement in decisions was 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.15 The low prevalence of advance care planning suggests a tendency to avoid addressing the issue with family,38 and efforts should be made to improve this. Advance care planning implies the involvement of family, in what have been called “expectation conversations”.39 Only 3.4% of NH residents were involved in conversations on desired end-of-life care in the van der Voot et al. study36 (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”,38 systematic, periodic conversations with families are a crucial instrument to reducing NH staff’s uncertainty in clinical decision-making and to improve the family’s perceptions of quality of care in NHs.39–40
Critical decisions may affect the time of death, the place of death,33 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),41 personal and societal values and constraints, and medical training that is overly focused on curing.15, 42 A framework that shares this planning with the family may reduce the temptation to revert to the use of defensive medicine (i.e., practices undertaken primarily to avoid liability rather than to benefit the patient), which may be partially responsible for resuscitation attempts, placement of feeding tubes,25 the drawing of blood samples, the avoidance of writing DNR/DNH orders, etc. This behavior 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.