We need to talk about death: Complaints about end of life care

When treating a patient who has reached the end of life, clear communication and collective decision-making are as important as any clinical intervention, says Sarah Whitehouse

Death is the last great mystery. In modern society, so too is dying. In Victorian Britain, births, and deaths, took place in the home. Today, death is removed from the family sphere and many people do not experience the death of someone close to them until they are well into midlife. We do not discuss death and dying openly.¹

We go to extraordinary lengths to avoid referring directly to death; euphemisms such as “passed away” or “fallen asleep” shift our discomfort and allay our fears of upsetting relatives. Even the Liverpool Care Pathway, much vilified by the press, is named after the city it was developed in, rather than its intended purpose as a care plan for the dying.

Denying death, by being uncomfortable talking about it, means that it can be hard for healthcare professionals to have the difficult conversations with patients and their families that are necessary at the end of life. In the space of what is unsaid, confusion, uncertainty, and, ultimately, complaints about care can reside.

In April 2008, the Healthcare Commission reported that no less than 54% of complaints related in some way to end of life care.² The number of complaints received about end of life care can depend on where a patient dies. The National Bereavement Survey (2011) found that bereaved relatives felt 87% of hospice doctors and 80% of hospice nurses showed patients dignity and respect all the time, compared to 57% of hospital doctors and 48% of hospital nurses.³ Perhaps this is to be expected: the whole purpose of a hospice is to provide specialist palliative care, tailored to an individual patient’s needs.

Communication with compassion

A survey of MPS hospital doctor members found that, of those who had received complaints related to end of life care, 39% were related to poor communication: 32% of these were in general medicine and 26% in surgery.⁴ Similarly, a study by the NHS National End of Life Care Programme into four hospital trusts over a six-month period found that complaints largely related to communication issues.⁵ But a patient’s death, if handled well, can be a rewarding experience for doctors and families are often very appreciative.

Dr Nicky King, MPS medicolegal adviser and former consultant in palliative medicine, says: “The major issue is always communication. If a patient has their original diagnosis – that first bit of communication – delivered badly, everything else seems to flow from there.

"I don’t want to achieve immortality through my work. I’d rather achieve it by not dying.”
Woody Allen

When a complaint might come in related to end of life care, you can often look back and see that this particular family has had a bad journey; from the outset, they felt that no-one communicated with them properly. If there is good communication between a doctor, patient and their family, whatever the physical outcome, grief is usually handled better. The family have been communicated with and feel involved.”

Poor communication at the outset can put pressure on colleagues dealing with a patient’s care at a later stage. One MPS member describes their experience of receiving a complaint related to end of life care: “Unfortunately, the consultant had not explained the diagnosis or prognosis of this terminally ill patient very well, either to the patient or their family. They were very upset over how it had been explained and it fell to me as the junior doctor to do this.” The EWTD means that the same doctor cannot be with the patient for any extended length of time. Strong handover procedures need to be in place to ensure good communication.

A doctor may believe he or she has communicated essential information, but it may have been done in such a way that patients and their families have not heard it, particularly if they are feeling distressed or vulnerable. Families often have unrealistic expectations of what can be achieved; not hearing may be a means of coping. It is important to be aware of this, repeat information and check understanding.

You should always make sure to document that such discussions have taken place in the patient’s notes. Dr King says: “I think this is partly what is happening with the Liverpool Care Pathway (LCP); families are hearing that their relative is dying for the first time only when the LCP is mentioned, even though their relative’s prognosis has been discussed with them before.”

Much of the furore that surrounds the LCP in the national press is related to the lack of communication before its implementation. A national audit recently disclosed that almost half of all patients who were placed on the LCP were not told that life-saving treatment had been withdrawn. One in three families were never given the leaflet that they should have received, to explain the consent process.⁶

"A national audit recently disclosed that almost half of all patients who were placed on the LCP were not told that life-saving treatment had been withdrawn"

The GMC’s Treatment and Care Towards the End of Life says: “It is important that you and other members of the healthcare team acknowledge the role and responsibilities of people close to the patient. You should make sure, as far as possible, that their needs for support are met and their feelings respected, although the focus of care must remain on the patient.”⁷

If death is imminent, the patient does not have capacity and the family are not around, however, it may not be possible to speak to family members before commencing the pathway. Ultimately, you must do what is best for the patient, after careful discussion with colleagues involved in their care.

The blame game

Complaints usually stem from stressful events at a time when people are at their most vulnerable and scared.⁸ In the anger of grief, families often look for someone to blame for the death of their loved one, but the problem often lies in the disparity between the family’s expectations and the reality of the situation, and the gulf of poor communication that lies between.

Making a complaint can be a cathartic experience for the family. During the complaints process, families have to relive issues and write down facts and events; being able to tell and repeat their story allows them to work through their grief, knowing that someone is actively listening. “Resolution of grief creates a continuing bond that the survivors maintain with the deceased,” says Klass (1996).⁹

Healthcare professionals should ensure that complainants do not become stuck in the process, and issues are resolved openly, honestly, professionally, and within an appropriate timeframe.

What can doctors do to mitigate complaints?

Anticipating is the watchword in palliative care: anticipating what will happen and what to tell patients and their relatives. Just because you may have seen a certain condition or procedure many times before, it doesn’t mean that the patient or their relatives will know what may happen.

Anticipatory prescribing is also important – perhaps getting drugs and prescriptions ready in anticipation of what will be needed in the coming days, or even hours.

Part of the anticipating process is discussing end of life care plans in advance, rather than when the patient is acutely unwell. Dr King says: “Patients are usually happy to have such a conversation – it can put their mind at rest and allow them some control. They can pack the information away until it is needed. Doctors often fear upsetting the patient and may be reluctant to initiate such a discussion in advance, but it does help.”

"Part of the anticipating process is discussing end of life care plans in advance, rather than when the patient is acutely unwell"

A reluctance to discuss death within families can mean that often, if a patient loses capacity, their relatives are unaware of their wishes and how best to help and support them.¹⁰

If, in a hospital setting, the family hasn’t been prepared for their relative’s death, doctors can help allay concerns by taking time to offer a comprehensive debrief to the family soon after the death. Talking through the process and explaining in layman’s terms what happened, and answering any questions, may well avoid a complaint, but more importantly, it shows compassion and can allow families the chance to begin to make sense of what has happened, and gain some closure.

Relatives may associate a lack of compassion with poor clinical care, leading to complaints. Perceptions of brusqueness amongst staff, for example by quickly returning the deceased’s belongings to the family, or beginning to clear the room, can make the family feel that their experience is not valued, and the care their relative received suboptimal.

Different cultures treat death differently

Some cultures are death accepting, some death denying, and some even death defying, using invasive medicine to defy death, whatever the cost to peaceful end of life care.¹¹

In the West, we often try to deny and defy death. Some relatives cannot accept that their elderly relative is at the end of life. One MPS member comments: “A common theme is a difficulty in understanding that frail older people with multiple comorbidities and particularly dementia do die, even in the presence of optimum medical care.”

"If both doctors and patients were more honest about the limitations of medicine, and more able to talk about death and dying at an earlier stage, a lot of complaints related to end of life could be avoided"

In some cultures, talking openly about death and dying is not acceptable – it is disrespectful, bad luck, or causes a loss of hope. Many cultures actively protect dying family members from knowing their prognosis.¹² For some families, talking about death is taboo and a religious leader may be needed to facilitate the conversation with the male family leader and the healthcare provider about end of life care. Anticipatory planning for end of life care cannot be done in such instances, which can make the healthcare professional’s job even more difficult.

If there is a cultural mismatch between doctor and patient, the process of communicating about expectations surrounding end of life care can be even more fraught. Doctors may draw upon their personal experiences, whereas they need to be aware of different cultural nuances and how these can influence expectations about end of life care. If reality does not meet expectation, and expectations are not discussed, the end result is quite often a complaint.

Even within Western cultures, there are differences as to how death and dying are viewed and accepted. In parts of Ireland, cultural norms such as the traditional wake make it easier for families to accept death as the body is laid out and death comes back into the family home. This can be compared with the modern rituals of death in hospital, which allow society to dissociate itself from death and dying.¹³

“End of life care is a very underrated aspect of care that we’re not dealing with or teaching our doctors about very well,” says Dr King. Doctors should receive appropriate training so that they are better able to manage patient and family expectations, and are better able to view death as an inevitable consequence of life, rather than a failure of medicine.

Dr King concludes: “If both doctors and patients were more honest about the limitations of medicine, and more able to talk about death and dying at an earlier stage, a lot of complaints related to end of life could be avoided.”

Dame Cicely Saunders, founder of the modern hospice movement, said: “How people die remains in the memory of those who live on.” It is important as healthcare professionals to ensure quality end of life care.

Case study: Professional communication matters

Mr J, aged 67, had lung cancer with liver and brain metastases. A week previously he had been informed that his cancer was terminal. His family were made aware of the prognosis, but the oncologist, Mr M, seemed to suggest Mr J still had months to live. Mr M did not inform Mr J or his family that there was a possibility of rapid deterioration and sudden death or provide any advice on what to do if this happened. No advance care plan was discussed.

One Saturday evening, Mr J was watching TV at home with his son and daughter-in-law. He suddenly became drowsy and confused and his worried son rang the out-of-hours (OOH) doctor.

The OOH doctor arrived promptly. Without access to Mr J’s notes he decided that he needed immediate hospital treatment and called an ambulance. In the Emergency Department (ED) the registrar, Ms H noted Mr J was now poorly responsive with erratic respiratory effort. Again, with no access to the medical records, she felt intubation and a head CT was needed but Mr J suffered a cardiorespiratory arrest before this could be done. Resuscitation was unsuccessful.

Mr J’s son and daughter-in-law had been left in the busy and noisy waiting room. They were anxious and confused and wanted to be with Mr J. Fifteen minutes later Ms H came to inform them that Mr J had died.

Mr J’s son was very traumatised. He initially complained that Ms H could have done more to save his father. When the extent of his father’s cancer was fully explained to him, he complained instead about the lack of information that the family had been given and the lack of information sharing amongst health professionals that had prevented his father’s death being peaceful or dignified.

Learning points

• If the oncologist had communicated clearly with Mr J and his family, they could have been made aware of the possibility of sudden death and planned for it accordingly.
• An Advanced Care Plan consisting of the right nursing support and the right drugs would have allowed Mr J’s end of life care to be managed at home. With Mr J’s consent, this could have been shared with his family, GP and OOH service.
• Check carefully to see whether an advance care plan is in place, and liaise with hospice colleagues if appropriate. Often, paramedics and OOH doctors do not have sufficient information as they cannot access medical records and this, combined with panicking relatives, can result in a terminally ill patient being admitted to the ED for active treatment.
• The relative might need reassurance and support that they can cope with a dying relative in a home setting, rather than admission to hospital being the answer.

MPS Educational Services runs a workshop, Mastering Professional Interactions, which covers specific strategies for clinical handovers.

References

1. Department of Health, End of Life Care Strategy: Promoting High Quality Care for all Adults at the End of Life p9 (July 2008)
2. Riley, J, A Strategy for End of Life Care in the UK, BMJ Vol 337 p185 (2008)
3. Office for National Statistics, National Bereavement Survey (VOICES) (2011)
4. An MPS survey of 414 hospital doctor members, End of Life Care (February 2013)
5. NHS National End of Life Care Programme, An Analysis of the Numbers of Hospital Complaints Relating to End of Life Care Over a Six Month Period in Four Hospital Trusts p7 (2010)
6. The Telegraph, Half of those on Liverpool Care Pathway never told (1.12.12)
7. GMC, Treatment and Care Towards the End of Life, Section 18, p20 (2011)
8. Lowson, S, Why Families Complain About End-of-Life Care in the NHS, End of Life Care, Vol 1, No 2 (2007)
9. Ibid
10. Department of Health, End of Life Care Strategy: Promoting High Quality Care for all Adults at the End of Life p38 (July 2008)
11. Toynbee, A, Various Ways in Which Humans Beings Have Sought to Reconcile Themselves to the Fact of Death, in Schneidman (Ed), Death: Current Perspectives pp13-14 (1976)
12. 
    Coolen PR, et al, Cultural Relevance in End of Life Care, Ethno-Med (1.5.12) Accessed 22.2.13. 
13. O’Gorman, SM, Death and Dying in Contemporary Society: An Evaluation of Current Attitudes and the Rituals Associated with Death and Dying and their Relevance to Recent Understandings of Health and Healing, Journal of Advanced Nursing, 27:1127-1135 (1998)

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