Communication with a person undergoing hospice care is an essential component of the overall quality of care being delivered in a hospice care facility. The quality of support provided depends on the choice of words taken to communicate with a person.1 As hospice care aims to provide maximal comfort and support to the person in consideration, it is therefore at all times necessary to listen actively, understand emotions, accepting moments of silence and reflect expressions actively as well. With an open mind towards the reality of life and death it is possible to talk about these sensitive topics. Communicating with the person at this stage can be tricky to tackle, however acting in the person’s best interests as listening to what the person has to say at all times is the single most important step. Allow the person a positive space and a communication friendly atmosphere, since the person undergoing hospice care has fought a battle in his or her life that is significantly different; therefore, always act with patience and act at ease.2
Let them speak their heart
Give the person time to process information in their mind. Add a few facilitating sentences as “If you want to talk in detail about your condition or describe it?” and try helping them find answers to the questions or queries the person has. Keep in mind the person undergoing hospice care may act with a constant change in emotion, since there is a lot going on in their mind. Respect the emotions they draw out of themselves. It is completely normal to feel sad, anxious or angry, allow them the time to cleanse themselves of thoughts. Allow them to express themselves and make them feel that you are there, you want to be with them and that they matter to you.3
It is OK to recall the past
The patient is prone to recalling their fond or bad memories of the past. Think deeper into their mind frame; as most of the people undergoing hospice care are separated from their loved ones and have plenty of time to think about the past. Cherish the moments with them when they talk about the fond memories and feel sorry when they are describing a dark past. Remember your response to their talk can change how they feel and react in return.3
The importance of silence
Keep in mind that they have been told that their end is near; it is a true test for you to show your love and provide them a sense of security. Most of the time they would want to tell you all at once and there might not be an answer except for listening to them and giving them gestures of approval. Sometimes you would want to interject however it is good to let them speak and interject only to add to the talk or as a ‘continue’ gesture. Many of the times, if not most of the times, the person would like to be alone and silent. You must act in accordance, give them space and time to save maximum energy. Don’t feel hurt or take it to heart, as you are giving them time to heal.
Be the one who is there and feels
The person may complain repeatedly about their symptoms or the worsening of their condition. They may even feel a burden to others. It is very important to make them feel that they belong to this world equally as we all do and that there are plenty of other people facing the worst scenario in life, practice being silent and neutral. Keep a soft voice tone and avoid nagging behavior at all costs. The person undergoing hospice care must be approached with a calm welcoming attitude. Avoid any hurry or hassle Infront of them. Show them that you have spare time for them. You have to follow their lead; you have to let them speak until they are finished.
Add a lot of thanking and appreciating words with correct frequency like “Ï missed you” or “I am thankful to have you by my side”, “I wish I could express my gratitude” or simply “thank you”, “thanking you in advance”, “bless you”. Seek forgiveness and apologize frequently. It will let them feel authoritative and respectful. Accept minor mistakes and let go of any regrets you hold. No need to feel personally hurt if the patient is disrespectful. Use “please,” “kindly”, “just as you would say” to make the person feel communicative.
Don’t forget to express your emotions and feel free to say words like “I love you”, ‘’I couldn’t have done it without you” try to validate their existence. You can include kind gestures as handshake or holding hands to offer support, make them feel that they are important in your eyes. Greet them by saying “I was waiting for this moment” “Let’s make another memory”. You can include some simple relaxing activities as coloring simple patterns or mandalas together; reliving their memories they cherish the most and feel proud of. Make them feel that they gave much to this world and their existence had a meaning.3
Prepare your mind for a clear conversation
You might want to be prepared before approaching a patient who is on end-of-life care support or given the last time period of their life. The choice of words must be simple, concise, clear and gradual. Moreover, you can find some unique words to accurately address your concerns or to help the person communicate freely. It is better to talk honestly and keep the conversation simple rather than making it complex. Allow the person to have a clear idea of what is going to be done to their assets, family and funeral after their death. Listen to the person and help them arrive at right decisions according to what they think and what must be done.
“How would you like me to help you?”, “may I help you with this”, “would appreciate it your way”, “We will get through this together”, “what is worrisome to you?”, “what makes you feel calm”, “you will get through or you will triumph”, “anything to add to your serenity”, “as a token of love”, “I respect your opinion or decision” are some phrases that will definitely help you through the conversation gap.4
Take your time to prepare the talk before approaching the person and the matters you are going to discuss. Try to write things on a piece of paper in case you are afraid of getting off topic. Try to record their decisions, statements and their opinions. Reflect back their sayings to confirm what they want or need. You can give them a pocket diary to write their opinions if they hesitate to talk about death directly. Sensitive and crucial decisions must be conversed face to face. Avoid phone calls or text messages if the topic you want to talk about is long and complex.
Why death must be talked about
Unclear communication can create discord in between people and can make room for anxiety and depression. Remember that it is difficult to talk about death in realistic means. Talking about death can be puzzling as the person who is about to die doesn’t want to bring up the topic of death as they may feel they are making you uncomfortable. Both the parties are afraid to discuss death equally. Only sharing the emotions of sadness even if someone cries at such a time can heal the burden on both the parties. Just keep the tone natural, positive and avoid giving advices or opinions of your own.3
Let the patient mourn and cleanse out their feelings of sorrow. You can share their sadness and uplift their soul. Keep a track of their needs and wants. Your goal must be to make them feel contented and wanted. Be there to help them in the first place. It is our responsibility to be facilitative towards the person undergoing hospice care. Their words might not be clear at times and they may not have a clear judgement. Reassure their opinion in such situations and carefully observe their face expressions and body language. It is wise to ask again rather than interpreting it wrong.
Approach the death conversation slowly, give them a proper atmosphere to discuss, think and recalibrate their thoughts. You can start by highlighting how the discussion about death can make things transparent for both the parties. Let them know you want to share this moment with them as much as possible. You can talk spiritually about it. You can share the sorrow by talking about it metaphorically like how a flower blooms to its full potential and paves way for new flowers to bloom. You don’t have to make everything seem normal, but you have to let the conversation flow naturally.3
Asking for advice or help is normal
Take the help of the hospice care team or a nurse or medical professional when things seem to get out of hand or when either one of you is overwhelmed by emotions. Most people may find it offensive to talk about death to anyone except the people who are close to them. It is very important to study the mood and emotion of the patient and respond carefully, accordingly.1
On a wise note, remember that the time you spend with the patient matters the most to them. So, make it unique, realistic, motivating and enjoyable for yourself and your loved one. Make the most out of every moment you spend with them. Enjoy the clarity of life as you discuss the truths one at a time gradually and make it memorable.
1. Bhatt A, Mitchell A. Effective Collaborative Communication in Hospice Care. Palliat Med Care Open Access. 2015;2(1). Accessed January 2, 2021. http://www.symbiosisonlinepublishing.com/palliative-medicine-care/palliative-medicine-care16.php
2. Datta-Barua I, Hauser J. Four Communication Skills from Psychiatry Useful in Palliative Care and How to Teach Them. AMA J Ethics. 2018;20(8):717-723. doi:10.1001/amajethics.2018.717.
3. Talking about dying | Dying with cancer | Cancer Research UK. Accessed January 2, 2021. https://www.cancerresearchuk.org/about-cancer/coping/dying-with-cancer/coping-with-the-news/talking-about-dying
4. Tips for Talking with Someone Who is Dying. Accessed January 2, 2021. https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Communication/Tips+for+Talking+with+Someone+Who+is+Dying.aspx