Journal of the New Zealand Medical Association, 18-June-2004, Vol 117 No 1196
Caring for patients and families at the end of life: withdrawal of intensive care in the patient’s home
Sue Mann, David Galler, Pamela Williams, Paul Frost
As providers of intensive care, we are advocates for individual patients and our duty is to alleviate their suffering and assist them to return to a life with an acceptable level of functioning. Whilst the intensive care unit is generally portrayed as a place where lives are saved, there are times when ongoing support is deemed to be inappropriate1 or futile.2 Under these circumstances, the primary focus of care is shifted from active organ support and life saving to the individual patient’s comfort and the support of the family—hence the management of death is a major part of intensive care practice. This is time-consuming and emotionally draining, but very rewarding when done well. Certainly, there are occasions where it can be appropriate for the patient to die at home.
In this report, we present 17 such cases in which intensive care modalities were withdrawn in their own homes, to highlight the importance of this option to individual patient and family groups. The purpose of this article is to raise awareness (amongst the intensive care healthcare community) that this may be a well-accepted and desirable endpoint for appropriate patients and their families.
Each year in our ICU, around 100 patients will die (Table 1). Until recently, all of these deaths have been managed in the ICU. This decision (to withdraw or withhold life-sustaining therapies in any patient) is only made when all of the attending medical staff have reached a consensus view that is the correct management in each case. This position is then discussed with the family from whom agreement is sought and invariably given.
Table 1. Outcome statistics for the Department of Intensive Care, Middlemore Hospital
Following a direct request from the family of one of our Maori patients (in whom active treatment was to be withdrawn following a devastating intra-cerebral haemorrhage), we transported that patient home to die. As a result of that experience, and the very positive feedback that we had following it, we now approach selected families of those patients facing imminent death, to discuss whether this would be a desirable option for them. Not all families of appropriate patients are approached. This decision is made on the basis of subjective criteria, which relies heavily on the relationship between the treating nursing/medical staff and the patient’s family.
Before allowing the patient to die at home, the following conditions need to be met (and fully explained to the patient’s family):
Whilst most staff recognise the inherent good in such an approach, some nurses feel uncomfortable with transferring patients home and withdrawing support. Nurses (who accompany the patient to their home) must be experienced, confident, and have already established a close relationship with the grieving family. In addition, the nurses’ security must be assured.
Our current practise is for two nurses to be accompanied by paramedics and for them to be in frequent communication with the ICU by cell phone. This provides continuity of care and ensures that the process is performed in a smooth manner. (These ICU nurses are well versed in the transportation of critically ill patients who are transferred home by road ambulance.)
The patients themselves usually require the same supportive treatment en route that they have required in the ICU. Some require even more support. During this process, the patients are sedated with infusions of morphine and midazolam. Muscle paralysis is not used.
On arrival at the family home, intubated patients are extubated and inotrope and other supportive treatments are stopped. Extubating the patient and removing nasogastric tubes and intravenous lines helps restore the patient’s normal appearance,3 and is well accepted by the family.
If the patient is not expected to pass away quickly, our staff will stay longer at their home—to ensure that they and the family are comfortable, and so that a proper handover is given to the district nurses, general practitioners and the Hospice Service. We are fortunate in that the Hospice Service will visit regularly to ensure that the patient is comfortable and that the needs of the family are being met. Our own nursing staff are able to treat discomfort with IV morphine whilst the district nurses and hospice staff administer morphine subcutaneously using a Graseby pump.
Following each death, we make contact with the family and health professionals involved, as a form of debrief to ensure that we continue to adequately meet both the needs of the deceased and their family members.4,5
We managed the deaths of 17 Intensive Care patients in their own homes (Table 2). All of the patients were Maori or Polynesian, who comprise almost 35% of our ICU population but only 20% of the region’s total population. The patients were relatively young; average age 51 years (range 19–83 years). (The average age of our adult ICU population is only 54.)
Sixteen out of the 17 patients were ventilated for transport (and extubated in their homes) whilst 7 of the 17 had inotropes withdrawn there. Their co-morbidities represent the range that we frequently see in our Maori and Pacific populations; in particular, ischaemic heart disease, hypertension, diabetes mellitus, and chronic renal impairment.
Four patients (patient 6, 9, 12, and 13) suffered a severe hypoxic ischaemic brain injury following cardiac arrest; one patient (10) suffered a community cardiac arrest as a result of severe intra-abdominal sepsis—she had poor neurological recovery in the face of ongoing multi-organ failure. Three patients (1, 4, and 16) had massive intra-cerebral haemorrhage secondary to hypertension; one patient (8) developed brain death following pneumococcal meningitis. One patient (5) had severe bronchiectasis resulting in multi-organ failure, and the tenth patient (2) had cellulitis resulting in multi-organ failure. One patient (11) had irreversible respiratory failure, and two patients (14, 15) had ongoing complications following surgery, which could not be resolved.
Table 2. Patients taken home to die (1996–2002)
Table 2. Patients taken home to die (1996–2002) continued
SAH=subarachnoid haemorrhage; ICH=intracerebral haemorrhage, CAP=community-acquired pneumonia; CP=cor pulmonade; CORD=chronic obstructive respiratory disease; IHD=ischaemic heart disease; PH=pulmonary haemorrhage, CCA=community cardiac arrest; HT=hypertension, CCF=congestive cardiac failure; CRF=chronic renal failure; AF=atrial fibrillation; SEP=sepsis, SUR=complications following surgery; RVD=rheumatic valvular disease.
The length of time from admission to the decision to withdraw active treatment ranged from 36 hours to 24 days. The length of time from the arrival home of the team together with the patient and withdrawal of active treatment to death of the patient ranged from immediate (8, the brain-dead patient) to 72 hours. We were unable to obtain the exact time of death in the case of patient number 9.
The literature specific to taking critically ill patients home to die is scarce—only one article has been found and this is in reference to neonates.4 In contrast, there is substantial literature that addresses the terminally ill cancer patient being cared for at home.5,6 Although there are many similarities in approach, there are also many obvious differences, both philosophical and logistical.
Bascom and Tolle7 compiled a list of family requirements during the final stages of a relative’s illness. They emphasised the need for frequent and frank communication between staff and patient or their family; the need to be aware of family dynamics; the need to focus on what the patient would want, and the need to attend to their comfort. These are the principles on which we try to conduct our relationships with families. It is on this basis (full disclosure and trust) that we approach families to discuss limiting or withdrawing active treatment in favour of comfort care.
In New Zealand, living wills are still relatively uncommon and families are seen to make decisions and act on the basis of the ‘perceived values’ of their loved one. We believe this to be an example of substituted judgement—ie, the family are acting in accordance with what they believe the patient would want.
In the intensive care setting, it is the family who must act as the patient's proxy (as well as the family having to accept that the illness is terminal, irreversible and the treatment futile). The process of decision-making around limitations in therapy and withdrawal of care requires time and patience. Although family wishes are always respected, it is not a decision that they are equipped to make alone, nor one that they should carry the responsibility for. In New Zealand, it is the medical staff who ultimately take on this burden.
Dunlop8 stated that ‘given a choice, most patients prefer to die at home’. Whilst this seems so intuitively correct, it is not a decision that most families or staff can come to easily. With this in mind, it is interesting to note that all of our patients (who were taken home to die) were of Maori or Pacific Island descent. Whether this truly represents a cultural difference or is the result of a practice bias is difficult to ascertain—to answer this, we would need to have records of all the families in whom this option of care was considered or was offered and refused. To date, we have not done this.
In our experience, we see Maori and Pacific Island families openly exhibiting a powerful sense of family and familial duty. They have no tradition of rest home or hospice-based care, and are usually accompanied and surrounded by large groups of extended family, many of whom appear to be willing and able to share the burden of caring for a dying relative. Since completing this paper, we have taken our first European patient home to die, and in the future we will ensure that this option of care will be more closely considered for all patients in this position.
The time period (from admission to making the decision to withdraw life support) ranged from 36 hours to 18 days. Given the diagnostic categories of these patients, this range is not unusual and reflects our collective ability to reach a consensus view that ongoing active support is inappropriate or futile.
Despite cultural differences, all families need to be assured that the medical care, comfort, and dignity of their loved one will not be compromised by the move. This is a concern raised in the literature 10 years ago by Wanzer et al,9 when they stated ‘patients and their families need reassurance that dying at home will not entail medical deprivation’.
We have found that our patients’ families need to understand (as much as possible) about what is likely to occur, and to be given the necessary support to make this experience a positive one. A multidisciplinary approach is an essential feature in ensuring success for a venture such as this.
Of those 17 patients who died at home, we have records relating to all but one of them. Patient 8 was Brain Dead and died within minutes of extubation, whilst patient 4 had a high oxygen and inotrope requirement and died thirty minutes after arriving home. Those patients that survived at home for greater than 12 hours were either visited by their family doctor, district nurse or the hospice nurse. The feedback that we received from the families and people that visited them in their homes has all been positive.
We may be unique in having a dedicated bereavement team—a group of professionals from varying backgrounds who facilitate all post-death activity in the hospital. This team ensures all necessary paperwork is completed and coroner’s rules are adhered to. In addition, they manage the bureaucracy of death in a smooth and compassionate way. This service is available 24 hours a day, 7 days a week, and has substantially improved this aspect of our care to these families.
In conclusion, we believe that this new initiative is a positive practical option for some intensive care patients.
Author information: Sue Mann, Clinical Charge Nurse, Department of Intensive Care Medicine, Middlemore Hospital, Auckland; David Galler, Intensive Care Specialist, Department of Intensive Care Medicine, Middlemore Hospital, Auckland; Pamela Williams, Tutor, Manukau Institute of Technology, Auckland; Paul Frost, Intensive Care Specialist, The Heath Hospital, Cardiff, Wales, UK
Acknowledgements: We thank Middlemore Hospital’s Bereavement Team, palliative practitioners, hospice care practitioners, and Cultural Resource Unit; as well as district nurses and the local general practitioners; for their assistance and guidance in such a sensitive area. We also thank the staff of our ICU, who made this study possible.
Correspondence: Sue Mann, Department of Intensive Care Medicine, Middlemore Hospital, Private Bag 93311, Otahuhu, Auckland. Fax: 09 276 0080; email: firstname.lastname@example.org
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