Communication is a fundamental component of nursing in the provision of end of life care. Some people feel uncomfortable talking about death, but when you’re taking care of a patient who is dying it becomes necessary and beneficial to communicate clearly, and therefore it is essential to open up these conversations.
Good communication enables staff to establish the person’s priorities and wishes, supporting them to make informed decisions. It also provides an opportunity to explore any anxieties or gaps in understanding of the situation, can reassure patients and their families, and alleviate or reduce anxiety and distress.
Document the person’s wishes about the type of care they wish to receive, and check whether they have appointed an individual to make decisions if they’re unable to do it themselves.
Ongoing communication with the dying in a respectful and dignified manner should continue even when the person is unconscious as their sense of hearing may be maintained until death.
Remember in holistic end of life care it is “the little things that matter”. This may be offering to sit with someone for a period to talk about or with the dying person, or raising the height of the bed for a relative to be in a more comfortable position to attend or be close to the dying person. Please also consider a risk assessment regarding the use of bed rails, as these may be a barrier at this very intimate time.
In delivering end of life care there will likely be a number of sensitive conversations with individuals approaching the end of their life and those close to them. It is important to be able to initiate, facilitate and respond in these sensitive situations.
The last days and hours of someone’s life is an ever changing landscape and regular review of the persons’ needs is required. Constant communication is vital to ensure everyone understands what is happening and why decisions have been made.
Less experienced nursing staff are likely to find these conversations difficult on their first few occasions, and may struggle with what to say or how to say it.
Talking to relatives and loved ones
The care of family members becomes ever more central to the holistic care of the dying person. Their prime need is to be reassured of the patient’s comfort.
Provide regular opportunities for the family member to understand or be updated on the condition, treatment and or care given to the patient. Consider at what pace family members may like to know what changes to expect and how they will be managed. Make the family feel welcome at all times and consider what arrangements can be made to offer them space to rest and eat and drink close by. Some family members may wish to stay with the patient continuously or others may wish to be called back if death is close by. Some may wish to be involved in direct care giving. Provide advice and support as needed.
The benefit to families pre-bereavement of the nurse in helping both the dying person and those close to them understand the situation as it evolves and caring for them with intelligence, insight and understanding will contribute greatly to the experience of relatives and how they will grieve after death for the loss of their loved one. This is the legacy of nurses to those we care for.
The value of sensitive conversations and preparing people for what to expect as their loved one’s condition deteriorates can never be underestimated. This is often highlighted as a missing element in conversations that take place at end of life. Timely conversations will support preparation for bereavement.
Communication between teams
Most treatment and care at the end of life is delivered multi-disciplinary and multi-agency teams, working together to meet the needs of patients as they move between different health and social care settings and access different services. It is vital that teams communicate with each other to ensure best outcome for the patient and those close to them. This means all the team members involved in the individual’s care need to know how to respond when a deterioration occurs. Care planning for anticipated decline should always be in place. There are key points on the patient journey where there is an increased risk of communication breakdown. These occur most often at points of transitions of care e.g. when a patient moves from one care setting to another. To avoid this breakdown teams will use electronic communication as well as telephone in addition to written communication which may be slower.
This audio clip is a good example of the benefits of effective communication between team (hospital, care home and community), family and patient.
Communication with the unconscious patient
As the ability to communicate decreases, you should:
- Plan ahead to reduce family distress. Inevitably, when the ability to communicate with the patient begins to decrease, families will find this distressing. Often, the last hours of life are the time when they most want to communicate with their loved one. Time spent preparing families is likely to be worthwhile, as the degree of family distress seems to be related to how much advanced planning and preparation was put in place.
- Assume the unconscious patient can hear everything. While we do not know what unconscious patients can actually hear, experience suggests that at times their awareness may be greater than their ability to respond. Because we can’t assess a dying patient’s comprehension, we have to presume that talking ‘over’ the patient might cause them distress with the assumption that they can hear everything. To make this easier for the person, you should talk to them as if he or she is conscious and welcome families to create an environment that is familiar and pleasant. Surround the patient with the people, things, music, and sounds that he or she would like and include the person in everyday conversations.
- Encourage family to say the things they need to say. Sometimes, it may seem that a patient may be waiting for permission to die. Encourage family members to give the patient permission to “let go” and die in a manner that feels most comfortable to them. You could suggest other words to family members like:
“I know that you are dying, please do so when you are ready”
“I love you. I will miss you. I will never forget you. Please do what you need to do when you are ready”
“We love you. We will miss you, but we will be OK”
- Encourage family members to show affection in ways they are used to. Touch can heighten communication and give great comfort to both the dying person and those they care about. Encourage family and friends to make simple, personal gestures like holding the person’s hand.
Probably one of the most dreaded questions by all levels of staff is “Am I dying?” Each situation has to be responded to depending upon the circumstances and the context in which it has been said. However the following suggestions are offered for your consideration as responses. “You must be feeling really bad to ask me that” “May I ask why you asked that question?” “Is that what you are thinking?” “May I ask what makes you think that?” These types of responses will allow the person the opportunity to explore the conversation further whilst providing you with some time to gather your own thoughts. It may also be helpful to ask what the doctor or any other healthcare professional has said prior to this question being asked of you. Whilst there is no right or wrong answer it is less than helpful to ignore this question or to be dismissive in any way, and if you feel you really cannot take this conversation any further, simply acknowledge this is difficult and seek help from a more senior member of staff.
The taboo of death
Some people consider it morbid to talk about death; it is such a taboo subject that it has only increased our fear of dying.
This taboo of talking about death is based around fear, and it’s important that you develop the knowledge and skills to feel confident to care and talk with patients who are at the end of their life. You need to encourage all those close to the patient to discuss dying, including children in the conversation using language they understand.
Apart from the obvious fact that none of us know what follows death, people fear dying in pain and distress. Unfortunately recent reports about poor care may only heighten this fear, possibly increasing the challenges in communication with families for staff.
Relatives often say, “Please don’t let him/her suffer.” Talking openly about death has the potential to make it easier to deal with. Recognising death and how it relates to you, can make it easier for you to relate to your patients.