As people move along the trajectory of a life-limiting illness, they are likely to experience a range of emotions and they may need help in coping with their anxiety, fear and search for meaning.

People’s emotional and psychological needs are likely to be greater during the transition times:

• When a disease is first diagnosed
• When a disease in remission reoccurs
• When a disease progresses
• When a person can no longer do things they once did
• When a person is nearing end of life and is becoming weaker and more frail

You can provide the greatest support by being “present”.

• Be with the person physically and emotionally.
• Listen to their reactions and feelings and concerns in a non-judgmental way.
• Sit down so you are at eye level.
• Say the person’s name; hearing your own name is very grounding.
• Offer uninterrupted time for unhurried conversation.
• Be yourself. Be ordinary.
• Observe mood and behavior. Do not pit your anger against their peace or vice versa. If the person feels exuberant or joyful, feel exuberant or joyful yourself. Shed tears together. Laugh together.
• Make eye contact and physical contact: follow the person’s lead.
• Be specific about how you can help and what is going to happen. Don’t avoid talking about death.
• Be respectful; support a person’s dignity and sense of control.
• Think about how you and the person communicated before the illness, what worked and what may need help.
• Pay attention to what is being said, the tone of voice, the body language as well as the words themselves.
• Try different openings for conversation. “Tell me about…”
• Be attentive. Don’t let your mind wander. Stay “in the moment”.
• Do not let illness put a ban on laughter or smiles.

 

1. Read this scenario.

Elaine has been Ron’s caregiver for the last three years. Here is what she did in Ron’s final days of life.

• Even if Ron was not awake, alert or oriented, I still talked to him as if he was listening. I once heard that hearing was the last sense to leave a person, so even if he didn’t respond, I still told him stories of times we shared, of family members and friends. I just talked as if he were always hearing me; I think he was.
• I made sure there were lots of pictures of family and friends in Ron’s room at his eye level so whenever he opened his eyes he could see his grandkids’ faces smiling back at him.
• Ron was always a Johnny Cash fan, so I would put Johnny’s music on and have it playing in his room.
• I wanted to ease his suffering if I could so I would place a cool washcloth on his forehead, stroke his hair, and touch his hand. I would watch his face and if he grimaced or startled at all or frowned even a little, I would know I was touching too hard.
• When Ron was conscious and felt like talking, I listened. I didn’t interrupt even when I had lots to say about what he was talking about. Sometimes we just shared the silence together.
• I told him I loved him a lot. I think he knew. I wanted each conversation to include those words just in case it was our last.

2. Do you think that what Elaine did was remarkable? Why or why not? Write down your thoughts.

3. Are the things that Elaine did for Ron things you could manage too? Why or why not? Write down your thoughts.

 

 

Use these additional resources to learn more about the topic of being present with a dying person.

Canadian Virtual Hospice: Tips for Talking with Someone Who is Dying http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Communication/Tips+for+Talking+with+Someone+Who+is+Dying.aspx

Comforting Your Loved One When They Are Dying