Culture of Silence: Talking About Death and Terminal Illness

In the past, it may have been acceptable for doctors not to tell a patient they had cancer. There was a culture of silence around talking about death and terminal illness (Heyse-Moore 2009). In On Death and Dying (Kubler-Ross 1973) Kubler-Ross said it was often the wife or husband who was told the diagnosis and then had the burden of whether to tell the painful truth. However, the development of the Hospice movement and Palliative Care in the past 30 years has made it the duty of health care professionals to inform patients of their diagnosis. Now, there are General Medical Council guidelines (2006) that make it an ethical duty for the doctor to inform the patient of the diagnosis (Heyse-Moore 2009).

Parkes (Parkes & Markus 1998) discusses the importance of breaking bad news effectively and sensitively. Parkes sees this as an element in preparing for loss. He is specifically discussing how to care for the terminal patient, so this may be a limitation (Parkes & Markus 1998).He describes how the doctor should arrange and meet with patient. It is notable he does not provide exceptions and does not discuss involving family or speaking to a spouse first.

Parkes provides practical guidance possibly gained from clinical experience. He advises finding a “homely area” where everyone can be comfortable. This can be a place where everyone can sit and not be disturbed. The decor should be the opposite of clinical if possible. He discusses giving as much information as the patient can cope with, and suggests “bite sized chunks” of information (Parkes & Markus 1998, p. 8). He suggests inviting questions from the patient and using this to guide how to prevent information. The difficulty in talking about dying is where the patient becomes distressed and anxious, they may not take in what has been said, and may not fully understand the diagnosis or terminal nature (Parkes & Markus 1998).

If the dying person has a “thinking” coping style then the doctor can begin to help him/her focus on the feelings involved and expressing them; and vice versa for the person with a “feelings” coping style where the focus might be on the problem solving (Parkes 1996b).

In Bereavement: Studies of grief in adult life (Parkes 1996a) discusses the tendency for the family to conceal the truth from the dying person. He is clear that the patient should be told of the terminal illness. According to Hinton (1967) (see Parkes 1996a), dying people tend to know and value the chance to talk about their terminal illness. There is some evidence that older people contemplate the end of their life and possibly want to talk to others about it. In a small study of 20 older residents in care homes in the UK, only 2 residents did not wish to discuss dying and death and neither objected to being asked (MacKinlay 2006). Further, Parkes sees giving bad news as a process. It is the beginning of an anxious and stressful period. The doctor should take the time and with empathy help the patient to adjust to the psychological transition of terminal illness (Parkes 1996a).

In Speaking of Dying (Heyse-Moore 2009) Heyse-Moore discusses how it is possible to move the focus from the patient to the family if they are included in this initial discussion. Also it is possible for hidden or concealed barriers between family members to come to light while breaking bad news. She also writes of bad news as the beginning of a process that becomes part of the dying person’s life. She advises being honest with the patient, including saying “I don’t know”. There is an emphasis on balancing giving information and supporting the patient with his/her feelings and reaction to the news. The point is also made that an older generation of patients can react passively as they are used to “doing as the doctor tells them”.

There has been some research in communicating with the dying that agrees with Parkes. In a study in USA involving 137 individuals in 20 focus groups of patients, family members and health care professionals, there were some common themes identified around effective communication. The best communicators were suggested as being honest and using understandable language. Qualities elicited were being willing to talk about dying; being sensitive in giving the news; listening to the patient; encouraging questioning; being sensitive to when patient will discuss dying (Wenrich et al. 2001).

Information is necessary to cope and adjust in life in general. If the doctor fails to give correct information or even perhaps mislead the patient, this can cause confusion and distress as the patient may feel betrayed. The lie if told may not be consistent across teams and even silence can give information and be distressful to patients. This can undermine the trust implicit in modern health care (Parkes 1996b).

Parkes is speaking of the doctor as the professional who will break the bad news. This has probably been the sole duty and responsibility of the doctor in health care traditionally. Nurses and other professionals would face sanctions if they accidently gave information about the diagnosis. However, with the development of the multi disciplinary team; and professional roles for other health care workers it is possible for other members of the team including nurses to be involved in the meeting to discuss a terminal diagnosis (Heyse-Moore 2009).

Parkes however, conceives of the doctor as the agent of change for the patient. He argues that the medical profession should acquire the skills and knowledge to help the process of dealing with loss and with bereavement. He does not argue for a speciality role but instead argues that General Practitioners are ideally placed to facilitate this change process as they tend to build up a relationship with the patient over time and know the person well (Parkes & Markus 1998).

For Parkes the process that begins with breaking the bad news is not just about an ethical imperative to inform patients of their diagnosis. He believes that grief both for the dying person and the spouse and family involves “grief work” that is difficult and painful. For Parkes, breaking the bad news although this can be painful, allows the dying person and family to begin to prepare for loss (Parkes & Weiss 1983). He argues that anticipatory grief is less severe than grief due to unexpected death (Parkes & Weiss 1983).

This preparation can allow spouses to come closer together before death; and there is possibility of working through some grief prior to death (Parkes 1998) (Schaefer & Moos 2001). Kubler-Ross echoes this with her concept of unfinished business. She states that the dying person can share how she works through her grief and that this may allow the family to begin the process of grieving before death (Kubler-Ross 1973). Walter when examining the concept of unfinished business discusses the need to sort things out before death and if not attended to then this can lead to torment for the bereaved spouse and family (Walter 1999).

Death means a fundamental change to the person’s world. Distress and anxiety can result due to the difficulty in making sense of this seismic shock (Parkes 1997). A theoretical concept of Parkes is Psychosocial Transitions which he applies to losses in the broadest sense. He talks of a life changing event and an upheaval in the psychological internal world or assumptive world. Parkes view is that the dying and death of a loved one involves changes in meanings and relationships, status and roles and values which is why it can be so traumatic (Parkes 1993).

Parkes had done some research in one of his interview studies in Boston where he compared how two groups of bereaved spouses reacted depending on how much warning they had of impending death. In one group there was less than 2 weeks of notice and in the other there was over 2 weeks and even up to over a year’s knowledge of terminal illness. Parkes found that the long forewarning group fared better and more effectively in dealing with grief and this was consistent over significant period of bereavement (Parkes & Weiss 1983). Stroebe and Stroebe (Stroebe & Stroebe 1987) agree with this idea that forewarning can help deal with anticipatory grief and help spouses to share and resolve difficulties.

Parkes does not advise any exceptions to breaking the bad news. His approach is based on the universality of bereavement and the experience of loss. This may be a limitation for his work, if research suggests that grief and the process of bereavement is not universal to the human condition. Parkes, although he acknowledges concepts of pathological grief and mental illness, sees the process of loss as part of the human condition (Parkes & Markus 1998).

However, Heyse-Moore (Heyse-Moore 2009) provides a list of those who should not be given the bad news of a terminal diagnosis. Any patient who clearly states he doesn’t want to know his diagnosis or treatment options. The only caution here might be that often the dying person could change his or her mind and be ready to talk and discuss at some future point. Implicit in this example is the idea that the patient is autonomous and capable of making an effective decision regarding their healthcare and indeed their life.

Secondly, there is “demented person whose loss of memory means she has forgotten what you told her half an hour later” (Heyse-Moore 2009, p. 78). Thirdly, is the confused patient who cannot understand and fourthly, the psychotic patient who “are liable to incorporate the information you give them into their paranoid delusions” (Heyse-Moore 2009, p. 78).

The second example is the crux of the dilemma when dealing with Mr Brown in the incident in this essay. Together with the third and fourth examples about confusion and psychosis, the issue here is whether the patient has the capacity to make an informed decision about their treatment and ultimately, their life. Heyse-Moore argues that there should be a full discussion with the family and the multi disciplinary team with the aim of arriving at a consensus on how to proceed (Heyse-Moore 2009). This should also be done within the relevant health legislation framework, for example, in Scotland the Adults with Incapacity (Scotland) Act 2000 (Griffith 2006).

One example to illustrate this is sharing information with children. A study of a series of interviews with 20 social workers about their work with a total of 53 children of dying parents, revealed some guidelines in avoiding euphemisms with children and updating children regularly and giving information in “bite sized chunks” (Fearnley 2010, p. 453). However, one finding was that often the younger children were not given as much information and were not perceived by parents as understanding as much (Fearnley 2010).

A second example is with people with learning disability where withholding information about a dying relative can still be common. Read discusses several barriers to breaking bad news: such as lack of understanding about learning disability; some of sensory, behavioural and cognitive impairments of specific learning disabilities; and also, a continuing paternalistic attitude towards people with learning disability. This means treating people with learning disability as less than adult (Read 1998).

With dementia patients there is evidence that patients with Alzheimer’s are not told their diagnosis. Family members can be ambivalent towards disclosing diagnosis to their loved ones. However, in a study 69% of people experiencing memory problems stated they would like to know if further diagnosed with Alzheimer’s (Elson 2006). A systematic review suggested that disclosure of diagnosis with dementia is under researched. Euphemistic terms such as memory problems and confusion can be used. Clinicians reported difficulties in disclosing diagnosis to both patients and carers (Bamford et al. 2004).

On one level it is understandable that patients who perhaps lack capacity are not given full information about their own health or of those in their family or even details about death of loved ones. However, what is left if information is withheld but deception?

In a study of 112 staff working (in North East England) with dementia sufferers in care settings, 106 admitted to some form of lying to residents; 90% to ease distress; 75% to ease care givers distress and 60% to promote treatment compliance. Staff recognised both benefits and problems in using lies to help manage care (James et al. 2006).

In a further article, Wood-Mitchell et al (Wood-Mitchell et al. 2006) state that the most common reason given for a lie is when the dementing resident wants to see a deceased relative. Wood- Mitchell et al argue for a realistic stage response to such situations starting with sensitively imparting the truth; then trying meet the need by an alternative means; then trying distraction to some other activity; and finally using some form of a “therapeutic” lie. One of the problems care giving staff recognises in lying is inconsistency amongst the staff team and Wood-Mitchell et al argue that care planning should be considered to ensure consistency and also when lie should not be told.

A debate on the ethics of lying to dementing patients ensued in the Journal of Dementia Care in 2007, involving 6 separate articles for a variety of responses.

Walker (Walker 2007) argues that although lying to patients will happen but cannot be justified. She suggests finding alternate ways of interacting with patients using a Validation approach. She advocates being silence if the truth is judged too painful to give, though she emphasises staying with the person. The aim is to try and connect with the patient and workout the symbolic or hidden meaning.

Wood-Mitchell et al (Wood-Mitchell et al. 2007) then discuss the range of lies from outright lies down to not telling someone or not correcting them and so being deceptive. They argue against Walker’s Validation or symbolic meaning approach: describing dealing with dementia as problem solving where the sufferer has to sort cues out and find the correct behaviour. They argue that communication should be conceived of directly; else in the search for hidden meanings the nurse may ignore a basic need like going to the toilet.

Pool (Pool 2007) says the focus should be on emotions and feelings rather than factual information. She advocates using Rogerian principle of Congruence with person centred care for dementia sufferers and therefore cannot agree with Wood-Mitchell et al as this is fundamentally dishonest. While Muller-Hergl (Muller-Hergl 2007) describes care giving as being about integrity; and that suffering cannot justify lying or treating someone unethically. Fowler and Sherratt (Fowler & Sherratt 2007) does little but raise some further questions and acknowledge this in their article.

Bender (Bender 2007) makes a good case that the context is most important here. She argues that ethical absolutes are not useful for poorly paid and trained care staff. Bender advocates a realistic approach that accepts that in everyday life lies are tolerated and accepted and can even be valued to protect and care for someone. She suggests there is value in understanding a person’s life story and biography to aid communication and understanding. She also raises the question of new approaches to loss and bereavement around ideas of continuing bonds instead of accepting loss and moving on. Finally, she states the value of strong caring and therapeutic relationship that can withstand, if necessary the lie.