Intent-to-change end-of-life care practice as identified by 3200 healthcare professionals, by theme and subtheme
| Thematic and subthematic categories | Archetypal quotes |
| Communication | |
| Curb my own avoidance | Do not avoid—ask questions openly and respectfully. Use the word dying and communication effectively with not only the patient but their families and the team. |
| Conflict and conflict management | Goals of care to be negotiated and share plans of health care. Negotiate goals of care with patients as this is an essential skill for all nurses & professionals…conversations about end of life can trigger emotions in us. Goals of care conversations can become emotional, the key is to be prepared stress that conflict, or even difference of opinion, is a reality, having a strategy to manage conflict is essential. Good communication matters to families and can lead to healthier bereavement. |
| End-of-life discussions | Taking cues from this module, initially respond to a person's concerns by acknowledging their concerns or emotions…an opening into frank, straightforward discussion, rather than saying 'ummm' and not knowing how to respond, or whitewashing or glossing over their concerns. To make sure that the patient has informed information to be able to make their own choices and decisions about the care they feel they would like surrounding their end of life care. This information should also be shared between staff and correctly documented. Goals should be continually discussed with as these Goals can change through the progression of the patient’s illness. Recognising when a patient may be at the end of their life and ensuring that conversations and family meetings are had to ensure that the patient is expressing and communicating how they want their treatment to go. That their goals of care are heard and respected. |
| Listen effectively | To listen, give respect, talk about goals of life and involve the patient and family into the decision of treatment and symptom control. What does the patient want? What’s their care plan? Respond to patient's questions/fears by listening, communicating care being provided—with empathy, respect and dignity.… |
| Non-verbal | Pull up a chair. Is the first most important thing we can do with our patients, by listening, touch, or just a smile speaks volumes, I have patients that speak with their eyes, no need for words, this is a very basic human need, to know that someone cares & is there or listening. Listen for queues that can kick start a normally difficult conversion. Take time to listen. Acknowledge the pts feelings. Be truthful and state ‘I don't know’. Use the word dying if appropriate….Use body language that provides signals to the patient and family that you are concerned and prepared to listen. |
| Open communication | Start having open and honest conversations and asking more about patient's future wishes. Even though the Allied health position I am in is not normally the lead of these conversations, I could start talking more about what happens if you don't get any better or what would you like to see happen in the future. Have an open and honest discussion with patients about their end of life plans and hopes. Also be aware of the ICU trajectory and how we can work to normalise death and dying. |
| Speaking and responding more effectively and appropriately | Acknowledge the concerns of patients and their families. Stop what I am doing (including any planned intervention) and actively listen to the patient's concern. Don't be afraid to use the word death in conversations around end of life care. Provide clear expectations for patient and when this can't be done by my profession, liaise with the treating team regarding the patient's and family's desire to know what is going on… |
| Use appropriate language | Not fear the words 'die' and 'death' when communicating with unwell patients when they question me. |
| Virtues and emotional insight | |
| Awareness of my own emotions | Being more self-aware of my thoughts, feelings and what is coming out of my mouth. To not be nervous about open communication and having meaningful conversations with people about death. To understand the situation, to communicate to family and friends giving a clear picture of the situation, and to communicate the next stage of care for the patient. Checking the understanding of the family members to ensure everyone is clear on the next stage. Taking care of myself in the process is important to ensure I can be reflective throughout my dealings with others who are experiencing strong emotions and difficult time of coming to terms with impending loss. I would make sure that I maintained communication with in the team, the family and the patient. Upskill my own skills and knowledge to handle emotional and conflict issues and also to check my own emotions when dealing with conflict issues and debriefing with team member when needed. Referring to other staff who maybe more equipped to handle situations appropriately because of their skill level… |
| Awareness of others’ emotions | Acknowledge the anxious times that patients are feeling and not avoid the difficult conversation. If I cannot answer the question, find the right person / doctor who can and all team members support and reinforce the same response. Be more brave—be aware that it is a horrible discussion to have for any family, but I am the person that can start these discussions and help someone through this. It is not about me, it is about the patient and their family and loved ones. To really listen to what the patient is saying, and ensure communication is open and effective and the patient is never ever aware of time or feels rushed. I would like to ensure that any patient I have contact with is comfortable and feels safe to be able to open up and communicate their needs, wants, fears and not only feels that they have been heard but can see that by my actions… Don’t avoid conversations and communicating serious news—escalation of the patients suffering, the families sorrow and staff distress can happen quite quickly and requires an urgent response. There are many options for managing conflict and responding to concern, whether it is your concern, your teams, the patient or family. |
| Compassion | Being more compassionate and using the word ‘death’ in conversations; so as not to avoid the word ‘death’ or give patient's false hope on their health. Encourage open but compassionate discussion with a patient and/or their family about their changing situation; establish their expectations and aim to align them with the goal of care with respect to the patient’s condition/prognosis. Do not assume. Ask appropriate questions, involve all members of the patient’s family and friends that they wish to be involved. Allay fears and act in a competent, compassionate manner with skills, feelings, thoughts and words. |
| Aware of the concerns, fears, emotions and feelings of the patient | Commit to always listen to what may be behind any veiled question a patient may ask, and encourage him/her to ask what it is they really want to know. It is easier to just keep it all surface when you are busy. Recognise more the impact of the diagnose of a terminal illness on a person, even if at the time he/she is feeling reasonably well. Encourage more discussion. Acknowledge the concerns of patients and their families. Stop what I am doing (including any planned intervention) and actively listen to the patient's concern. Don't be afraid to use the word death in conversations around end of life care. Provide clear expectations for patient and when this can't be done by me, liaise with the treating team regarding the patient's and family's desire to know what is going on. Provide emotional support to patients and their families. |
| Empathy | Respond to patient's questions/fears by listening, communicating care being provided—with empathy, respect and dignity. But also asking if they have someone who can speak for them when they are no longer able to speak for themselves; and asking them if they have spoken to that person about what is important to them. Don’t rush. Give them the opportunity to talk stop and listen ask them to express what it is that concerns them the most now ask if they would like to talk about it or their goals of care. Be active listener show respect support and empathy allow the family time to include both patient and family don't miss the opportunity if it presents. Learn to embrace patient understanding and work on my empathy to improve my understanding of their perspective. Step back and reflect, seek support, being prepared for difficult situations, active listening, empathy, providing information/education. Up skilling conflict resolution. We are all here for the patient and their family as they face death and dying issues. |
| Dignity | Listen to my patient, treat respectfully and with dignity. Don't rush in to ‘fix’ the issue, it may not be fixable, raise false hopes. Be truthful and be kind. |
| Honesty | Listen to patient's concerns/fears and respond honestly within my scope of practice. Advise other staff members who may be able to provide additional support/reassurances. To not avoid the use of the work ‘dying’. It's a part of life and in order to provide patients with all the aspects and knowledge regarding their care and condition, it is important to be honest and address their fears/concerns regarding death. Do not be afraid to use the ‘dying’ word in an honest conversation. To listen more intently to my patients, acknowledge their fear and be honest with them when answering questions. Endeavour not to shy away from the hard questions. When I'm unsure of anything, seek my colleagues input. Respecting everyone's situation and assist in any way I am able to do so. |
| Professional mindset | |
| Confidence | Be brave in my response and answer truthfully. Continue to be brave and talk about death and dying within the context that it is not something that we as a society necessarily do very well and that it doesn't have to be something to be frightened of talking about. Being willing to ‘go there’ with patients if they raise the issue of death, in terms of its inevitability for us all, rather than just directing them to the doctors for more info/ a more informed ‘guess’ of time (probably do both those things). |
| Engaging in self-care | To understand the situation, to communicate to family and friends giving a clear picture of the situation, and to communicate the next stage of care for the patient. Check the understanding of the family members to ensure everyone is clear on the next stage. Taking care of myself in the process is important to ensure I can be reflective throughout my dealings with others who are experiencing strong emotions and difficult time of coming to terms with impending loss. As a health care provider know your strength and weaknesses, do not be ashamed to ask for support if required. |
| Open-mindedness | Listen and be more open to see others viewpoint without being judgmental. Ensure that the patient and his family, or the people of his choice are included in all of the ‘meetings’. Any treatment or lack of treatment, needs to be discussed and explained to the patient and his family. We are a team. …For many people there is a spiritual belief and this is more important than any other care. |
| Upskilling | Work towards being 'able' to have the conversations rather than being a 'novice'. Adapt and adopt phrases that will help me address the conversations. …continue educating myself about end-of-life care, being thoughtful in my practice and giving myself credit for already being a good clinician. |
| Person-centred care | |
| Goals, needs and expectations of the patient | Treat dying as an ongoing process and don't be afraid to use the “d’ word”. I love the phrase—if you get to the stage you can't make decisions for yourself who would you like to do that, and have you discussed this with them? Ask the question. In the event of you not being able to speak for yourself who would you like to speak for you. Have you spoken to this person? Not be evasive and use the word death or dying. |
| Respecting the patient, their family and wishes | My communication techniques with my patients and their family members so as to improve shared decision making and respecting their needs and improving end of life care. |
| Separating the person from the illness | Be aware that long standing illness is a trajectory to dying, it just takes time. Every time a patient is admitted with chronic illness, they are one phase closer to dying. Communicate openly, say the word dying, ask who they have to take care of their decisions if they are unable. Continually respect them as a person, never a disease. Ensure that patients are HEARD, that they are RESPECTED and that I am interacting with the PERSON—not simply a disease. |
| Supporting the patient and family members | Support people to have a better understanding of their current condition and what is being done medically as well as being able to talk about their wishes with family and loved ones. |
| Taking time to be with the patient | Let the person know I value them, giving them my time, patience and respect. |
| Professional practice | |
| Advocacy for the patient | To be in tune with the patient. To advocate and even educate less experienced staff about the signs of imminent death. To try to ensure that other health professionals including doctors don’t miss these signs that the patient is displaying. |
| Act quickly | I can be aware of the need to respond urgently when things are not going well and escalate my response by being more open in my communication with those involved with the patient to get consensus in treatment. I can escalate the problem by sharing it with others who can better make the decisions for the care of the patient—in this instance for me the first step would be a discussion with an ECP or the patients treating team if they are available. |
| Ask questions | Ask questions of the medical professionals and seek more information so I can support the patient and family and be prepared. Ask the question, if you become very unwell, and are unable to make decisions on your own health, have you chosen someone who can make those decisions for you? Do they know about it? Listen to the patient or client. Really hear what they are saying about their fears and concerns and then look at the diagnostics. Ask questions about pain, nausea and emotional concerns. |
| Identify end-of-life triggers | Will not miss any opportunity to start/create conversations and discuss patients/family’s needs, goals and dying. Will think of communicating about EOL as ‘telling the truth with kindness’ rather than ‘breaking bad news’. Will listen generously to patient/families cues, triggers and questions. Will use the available tools and triggers and be creative in adopting and adapting the appropriate approaches in communication. I have an understanding off the trajectory of illnesses. Using this I can have a basic understanding on how to explain the illness process to family and the patient. Using triggers to identify patients who may be heading towards end of life and beginning the conversation with the family and patient earlier rather than days prior to death. |
| Including patients and families in the team | Recognize that you are not alone you work as a team. Respect patients’ wishes and need to know their disease and their prognosis. Involve the family members in decision making. Set up family meeting with the multidisciplinary team. Listen and spend time with the patient then you will be able to gather information that are vital to patients well being. |
| Leadership | Effective teamwork encompasses leadership, clear goals, clear roles, trust, respect and a cultural readiness to allow patients to steer care. |