Communication During Chronic Illness and End-of-Life

"The single biggest problem in communication is the illusion that it is taking place.”
-- George Bernard Shaw, Irish playwright, critic, and political activist

As a caregiver, you can face major communication responsibilities when a family member or friend is diagnosed with a life-limiting illness.  These may include:

• relaying a diagnosis to others
• sharing health information with healthcare providers
• discussing and making care decisions with your loved one

Discussing ideas, words, feelings, and thoughts is what communication is all about.  It is important to discuss these with one another and to continue communicating throughout the illness.  The article Talking to a Dying Loved One may help remove some of the barriers to clear communication at this crucial time.

This section looks at the following communications topics.  

1. Conversations with the Person who is Dying
2. Sharing Your Feelings
3. Learning to Listen
4. What if We Don’t Agree on the Path Forward?
5. Speaking with Family and Friends
6. Family Meetings with Healthcare Providers
7. How Others can Help when Someone is Dying
8. Talking with Children about Illness and Death
9. Communicating with Healthcare Providers
10. What You Need from Healthcare Providers
11. What Healthcare Providers Need from You
12. What if I Can’t Do What Is Asked?
13. End-of-Life Conversations

We have to talk: A step-by-step checklist for important conversations is a very good reminder to go into a discussion with an open mind and with compassion for the other person's feelings.

1.  Conversations with the Person who is Dying

How do you go about starting what may be the most difficult conversation of all, a conversation about death and dying?  The document Talking About Death and Dying adapted from the Dying Matters website may help you with this process.    The articles Tips for Talking to Someone Who is Dying and What Do I Say from Canadian Virtual Hospice can also help you clarify what you want to say to a loved one who is dying.

If the diagnosis is not of imminent death, you have time - not everything needs to be said in one sitting.  Several shorter chats will tax the strength less and will give you both an opportunity to think about what has been said so far.

It can be important to ask your person about their understanding of their diagnosis/illness.  This may help you gauge whether or not they understood what healthcare providers have expressed about their illness.  You might also ask them if they want to review their diagnosis with their health care provider for further clarification or how much detail they wish to have.

The article 7 Care Tips for When Someone you Love is Dying may help you think about communication in a palliative situation.  Within the article, a Life Legacy Worksheet is described.  Perhaps you could use some of the questions from the worksheet as conversation starters.

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2.  Sharing Your Feelings

When someone you care about is terminally ill, it may be difficult to share your feelings with them.  You and your loved one are in this together, however your experiences and roles are very different.  They may be feeling frustrated that they cannot do more for themselves, while you could be having intense feelings of stress and overload with all of your tasks.

There will be practical challenges that need to be handled, and speaking openly and honestly about your concerns and emotions can improve the experience for both of you.  It may be hard in the beginning, but the more you say things out loud, the easier it may become for both of you to discuss your feelings when end-of-life is drawing near.

You may want to talk about topics such as:

• changing roles
• treatment and care decisions
• changes to your social and family life
• negative feelings such as anxiety, depression, fear, and loneliness
• caregiver stress
• where and how your person wants to die
• what to share with each other
• what to share with others

The Serious Illness Conversation Guide from Ariadne Labs is used by healthcare providers who struggle with these important topics.  It can be difficult to find the right words to begin and, whether you are a healthcare provider or caregiver, this Guide may also provide you with just what you want to say.

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3.  Learning to Listen

As a caregiver, you will be alongside a loved one during their end-of-life journey.  You will be the person who hears their plans, hopes, and fears.  Listening is not just hearing the words someone is saying; it is paying attention to their tone, choice of words, posture, facial expressions, and the volume of their speech.  The article 5 Regrets of the Dying may help you anticipate what some of their emotional burdens may be.

Minimizing distractions—for example, turning off the phone or eliminating background noise—can help with this complex task, and there are also a number of useful resources.  How to Listen Well from the Dying Matters website gives a quick primer on the subject.  “The most important gift you can give to a dying person is to listen. Here are a few golden rules of good listening which can help you open up communication:
•    Be respectful...
•    Be honest...
•    Use engaged body language...
•    Watch their body language...
•    Stay calm...
•    Keep grounded...
•    Try indirect questions...
•    Try leading questions...
•    Use short statements...
•    Don't fear tears...
•    Be quiet!...”

When the discussion is over, check with the other person and ask if they are ok.  Then, check your own emotional state to see how taxing it has been for you.  If you are feeling stressed, put the kettle on and have a cuppa to exercise a bit of self-care.  (Note:  See more about self-care in the About You: Self-Care Strategies, Activities, and Exercises section.)

The article The Art of Listening: How Open Are Your Ears? from Psychology Today offers yet another useful perspective you might wish to learn about.

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4.  What if We Don’t Agree on the Path Forward?

Some people may claim, “It’s my life.  It’s my death.”   But, as the caregiver, you are heavily invested in the situation.  You may have dedicated years to keeping your loved one as healthy as they can be.  When they make decisions to discontinue treatment or appear to be sabotaging their longevity, you may feel shocked, angry, and that all of your care was for naught.  A shift in direction may be difficult for you.

Rather than challenging your care recipient’s decisions, it may be more productive to ask them to help you understand.  How did you arrive at this decision?  Can you share with me what factors you considered?  Can you tell me what other options you considered?  Is this a final decision or are you still open to discussion?

This is How you Listen to a Dying Person may help you to gently prompt your loved one to tell you more about what they are trying to say, even though you know it is a message that will be difficult to hear.

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5.  Speaking with Family and Friends

As the caregiver, there may be times when you will need to have serious conversations with family members or friends, and these may take place either jointly with your care recipient or without them being present.   Sharing a serious diagnosis can be difficult and emotional.  As hard as it may be for others to hear, it may be beneficial to use the words death and dying, if that is the level of openness you wish to convey.

You may speak to people one at a time, tailoring the message to suit the individual and allowing them time to pause and digest what they have been told.  There are also benefits to holding a family meeting, allowing everyone to hear the same message, in the same way, at the same time.  Questions asked and answered by others may satisfy the need of those who are too shy to ask for clarification.  The group can comfort and console each other.

Either way, consider using clear and specific language.  Instead of “As things progress …”, use “When she is no longer able to be home …”.  Instead of “As the situation worsens …”, use “As Dad finds it more difficult to breathe, …”.  Rather than, “When the time comes …”, try “When he dies …”.

Now might be a good time to clarify how you and your care recipient intend to move forward.  “We welcome your company” vs. “We prefer privacy, please.”   “Please drop by” vs. “Please call before you come”.   “We are able to handle this ourselves” vs. “We need your help”. 

As the caregiver, you and your loved one may also wish to share with others decisions taken regarding treatment.  This can sometimes elicit opinions.  It may be useful to state whether a decision has been reached, whether options are being considered and whether input from others would be welcomed.

Palliative care staff have pointed out that when there is family disagreement, it is important to remember that each individual probably believes that what they want is best.  It may be helpful to validate what they are saying (I understand how you might think that, or why you feel that way ... ), and then refocus on Mom's wishes ( … but this is what Mom told me she wants.)

Such discussions can be made easier if Advance Care Planning has already been done.  Please see the next section of this module Getting Prepared: Advanced Care Planning for information on this important topic.

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6.  Family Meetings with Healthcare Providers

As the person’s condition changes, you may find that a family meeting with the health care providers is a good way to update family members, with everyone hearing the same message at the same time and in the same way. The meeting may reduce speculation and supposition and allow everyone to ask questions of the treatment team.

If your healthcare providers don’t provide an agenda for the meeting, you could proceed with these important elements in mind. Remember that it is a good idea to have someone taking notes.

• ask Healthcare providers to introduce themselves and describe their role in the care team
• have family members introduce themselves
• ask for an update on treatments and the current status of the person including enrollment in the Special Patient Program, if appropriate. This Program provides special care and support for Nova Scotians with rare conditions and unique care needs, respects patients’ wishes, improves patients’ quality of life, and reduces stress on patients and families.  Your health care provider will assist with the registration process and help you to create an EHS care plan that is right for your needs. You can watch this video for more information.
• discuss options and the path forward
• ask about supports available for caregivers
• see what questions there are
• summarize discussion so everyone leaves with the same message

When it comes to end of life care, it is helpful for everyone involved in your loved one's care to be prepared with information. With this in mind, CNS has developed a reference sheet to keep track of your loved one's palliative care team. This reference sheet can be kept conveniently located on your fridge, by your phone, in a binder, etc. The idea is that you will have all contact numbers close at hand, which will provide you with a visual reminder that you are not alone and that you are part of a supportive team caring for your loved one. This reference sheet can also spark discussions regarding palliative and end of life care. Here is the Palliative Support Reference Sheet.

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7.  How Others can Help when Someone is Dying

You will juggle with many responsibilities when you are giving care.  Some may best be left to you alone while others can often help with practical chores.  In the “Living and dying at home” section of our website, we explore asking for and accepting help, and provide a tool that may make it easier.

Just the presence of another person can be comforting to you.  Having someone who will be available to talk in the quiet and dark hours of the night can be a welcome salvation.

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8.  Talking with Children about Illness and Death

In the article Talking to kids about death and grief: 10 comprehensive tips, the author notes that children will  “ … look to you to clarify their understanding of what’s happened.  Confusion and lack of information will only leave the child guessing.  Although the simple truth may be heartbreaking, the fantasy of the unknown can be far more frightening to a child.”

Telling children what is happening and supporting them is a task that may fall to you.  Keep the message simple.  Gently share your emotions with them. Allowing them to see you cry and express your sorrow will normalize grief and may open the door to their own sharing.

How much is shared will depend upon the child’s age.  Their questions may lead the conversation.  For young children, asking them to draw pictures is sometimes more helpful than words; further discussion during play can sometimes make the conversation flow easier.   Even if there are no questions during the day, concerns can weigh heavily on the child’s mind at bedtime, and they may want to talk then.

KidsGrief.ca is a division of Canadian Virtual Hospice.  In the section Talking about Death and Dying topics are presented in plain language and the messages are brief, clear and direct, including:

• an early and honest approach to the first conversation
• the best time and place to talk
• preparing the space and yourself
• who should be there?
• explaining death and dying -- the 4 C’s
• preparing for an approaching death
• encouraging and responding to questions

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9.  Communicating with Healthcare Providers

Care providers have their own perspective, one that will be different from yours.   They may have many patients, while your person has only one or a small group of healthcare providers upon whom they depend.

Many patients were raised in a time when physicians were seldom questioned and their orders were generally followed without challenge.  Many doctors now advocate that patients and their caregivers need to be their own advocates in healthcare and believe that it is the combined knowledge and wisdom of the healthcare provider and patient that will lead to the best decisions.

By virtue of their training, healthcare providers speak a different language than most of us - the language of medicine and the language of healthcare facilities.  Upon diagnosis, many of us find ourselves in a foreign land, struggling to translate and understand unfamiliar terms and references.  However the Nova Scotia Health Authority booklet Your Rights and Responsibilities: Patient and Family Guide notes that “You have the right to ask questions and to receive information, in terms you understand, about your health care.”

It may be helpful to ask for assistance from a friend or family member to take notes during meetings with healthcare providers.  While you are concentrating on relating your observations and receiving updates on your care recipient’s condition, important messages can be lost. This Palliative Support Reference Sheet may help you keep track of the people involved in your loved one's care.

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10.  What You Need from Healthcare Providers

There will be many things you will want to ask about.  Have a list ready before a meeting with the healthcare provider.  When can we expect test results?  What is the wait time for this service?  Who is the contact if my care recipient’s condition changes suddenly?  What kind of support can we expect if we want to stay home through my person’s death?  What kind of support is available to you in your role as a caregiver?

You understand your care recipient, their desires and their needs, in a way no one else can.  As such, you have essential expertise.   On the palliative team there will be people who also have specific knowledge—in respiratory therapy, medicine, social work, or spiritual care—and like you they bring something specific and valuable to the table. You are all part of the team, and other members need to acknowledge you as a “partner in care”, and everyone needs to be kept in the important information loop.

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11.  What Healthcare Providers Need from You

Your input is important, perhaps vital, especially if your care recipient is unwilling or unable to speak for themselves.  So what will healthcare providers expect from you? 

Since care providers will only see your care recipient intermittently and for short periods of time, they may need you to tell them about changes you observe.  But how do you know what to look for? How can you tell what is significant?  There are various assessment tools available such as the Stages of Frailty, the Edmonton Symptom Assessment Scale, the Palliative Performance Scale, the Abbey Pain Scale. These may help you describe what it is you are witnessing in your loved one. You may want to ask your palliative team if there is a particular assessment tool they would find particularly useful.

Some time after the death of her daughter, a caregiver thanked one of the healthcare providers for seeming to innately know how much information to give her and when.  The healthcare provider responded by saying that it was not anything they were trained for but rather, common sense.  “When you danced around a question, I danced around an answer.  When you asked me something directly, I answered you directly.”

Keep in mind that healthcare providers may be struggling with how much information to give you.  If you are a person who prefers full disclosure, ask them to be clear and frank with you.  If you are someone who needs hard messages softened, say so.  Healthcare providers are humans who strive to do their best, but they need your help in identifying what is best for you.

Drawing the line between hope and false expectation is a brief article from a nursing publication that discusses the difficulty health care providers face in knowing how much information to share – trying to be honest and clear with a family, yet respectful of their emotions.

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12.  What if I Can’t Do What Is Asked?

Successful caregiving is supporting your person to the best of your ability, for as long as you can, while not damaging your own wellbeing.

What is the best of your ability?  How long is as long as you can?  Every individual must answer that for themselves. In the Moving in Together: Communication section of this website, we talk about the value of your setting boundaries for yourself; doing so is healthy, reasonable, and recommended.

As one caregiver said when the visiting nurse was encouraging her to push through her fear and continue giving care to her dying mother rather than have her enter hospital.   “I need to stop being the caregiver now. I just need to be a daughter to my Mum in her last days.”

Witnessing suffering can take a heavy toll on caregivers. One care recipient included in her advance care plan, “I want my children to know that if witnessing my decline or death is too difficult emotionally, it is OK to step away for whatever time is needed to make themselves well and able to cope.” It was a thoughtful and sensitive statement.  As she had been a caregiver herself, she understood that there is no room for judgement when a person has reached their physical or emotional limits.

Not all caregivers in a palliative situation will have support when they need it. Fear and the inability to anticipate what might happen next can be overwhelming, even paralyzing.  To feel that you are unable to continue to provide care without assistance is no commentary on your character or on what you bring to the table as a caregiver.  It simply means that you know your boundaries.  Talk over your concerns with your palliative team and follow your instincts.

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13.  End-of-Life Conversations

Many of us are afraid to talk about death and dying.   Once you get the conversation started, however, you might find those who are nearing death may want to talk about what is happening.  Most people know they are facing death and may be waiting for a sign that you are ready and willing to talk to them.  They may be more worried about you, that you are struggling and finding it difficult to accept what is happening, so they won’t bring up anything that may cause you more pain and suffering.  In protecting each other, you both may be missing out on the opportunity to tell stories, admit mistakes, share memories, and most importantly say, “I love you, I will miss you, I will never forget you.”

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