How to Support a Terminally Ill Person

This Q&A was originally for an interview with healthcare website The Paper Gown 


Q: If there were five rules for comforting someone who is terminally ill, what would they be?
A. The role of chaplains and counselors who work with end-of-life is to help the patient and his/her family deal with the reality of their loss, because the fact is that we cannot take a patient’s emotional/spiritual pain away. In a healthy relationship with suffering, we shift from wanting to relieve it to wanting to work with it. Psycho-spiritual suffering when facing end of life has purpose and meaning. Reassurance (i.e. “comfort”) devalues that suffering.

If I had to offer five points for helping a terminally ill person work with their suffering, I would say this:

1. Help them accept the reality of the loss.
2. Help the patient establish open, honest communication with loved ones and the care team.
3. Lovingly review the patient’s life, seeking and offering forgiveness, exploring regrets, and expressing love where needed.
4. Create an end-of life plan to address practical issues (financial & legal concerns, advance directive, etc).
5. Create an after-death plan for the memorial service and on-going remembrances and rituals.
   
   

Q.  In your experience, can you describe the emotional journey of a terminally ill person?
A. Nobody can describe another person’s emotional journey, and none of it is measurable or predictable. If you’re thinking in terms of Elizabeth Kubler Ross’ “stages of grief” for people facing their own deaths, this is no longer considered a viable theory. Each person has their own journey. Some are angry or evasive, refusing the face the reality of their situation, while others are open and accepting, eager to discuss and experience every aspect of the their illness and impending death. There is no “one-size-fits-all” formula. 

 

Q.  What advice would you have (coping strategies, etc.) for the person who is grieving a terminal friend, while trying to comfort that person?
A.  In attempting to soften the harshness of the current reality, or to give the patient hope for a miracle or a better life in heaven, or whatever the friends are offering as comfort, they are actually trying to comfort themselves. Unfortunately, because our culture offers very little education and guidance about how to work with grief, most grievers are completely unprepared for coping with loss, and have no idea what to say to a dying person.

Instead of trying to comfort and reassure the person, it is better to offer tools for the journey, rather than trying to pretend that the journey isn’t what it really is. Those tools can include assistance with meditation, journaling, life review, family healing, or sacred ceremony…  or simply just being present without offering anything at all. Psycho-spiritual pain is not something to be dismissed or denied. It is full of value, and if we ignore that value, we are doing a disservice to that person’s life.  

 

Q.  Instead of “How are you?”, what can I say to a terminally ill person?  
A. A terminally ill person is tired of hearing people ask, “how are you?” Instead, I would ask, “What was your day like today?” Or “What do you need today to feel more at peace?”  Or “What can I do to help make today better for you?” Even better, don’t ask any questions at all. Start with a statement, such as, “I’m happy to see you today.” And let them lead the conversation from there.

 

Q.  Should I follow the terminal person’s lead, regarding interaction or conversation? Or should I try to guide the conversation myself if things are getting bleak?
This is a common problem; the dying person is perfectly fine discussing their condition and expressing their needs and feelings, but it makes the visitor uncomfortable. So the visitor tries to change the subject toward a “happier” topic. This is absolutely the wrong approach. You should ALWAYS  let the patient lead the conversation. If they are feeling bleak, that’s fine; be present for their bleakness. It’s part of the process, and they need to explore those feelings. Meet them were they are. The idea is not to avoid the tough topics.  The idea is to address them.

 

Q.  What do terminal patients respect and feel supported by in open conversation? Honesty? Candor?
A. This is a culturally-subjective question, which is why professionals need to have multi-cultural literacy. In some cultures, honesty and candor is the best approach. In others, it would be considered rude or inappropriate.

For example, according to contemporary research, [1] many Asian groups think it is more compassionate to withhold the truth from a dying patient, and Japanese physicians are more likely to than U.S. doctors to discuss the condition with family members before discussing it with the patient. [2] Some Asian and Hispanic families prefer to “remove the burden” from the patient, while African Americans tend to promote the individual’s wishes. Chinese, Hispanic, Korean, Filipino and Mexican Americans are more likely than Europeans or African Americans to believe the family should be the decision maker.[3] Although there are always exceptions, there has been a lot of excellent research on this.

 

Q. What tips do you have for a final goodbye?
A. It depends on the patient’s attitude and wishes, and also on the family dynamics. In a perfect world, the whole family would gather at the bedside and share stories and memories with the dying person, holding their hand, kissing them goodbye, saying “I love you,” etc. But it doesn’t always happen that way. Some families don’t talk to each other at all, or are uncomfortable with strong emotion. There are no recommended tips, because every family is different.  

What I would advise is this… some dying patients don’t want to have any kind of funeral or memorial service. While we should respect their wishes, this is one area in which I would try to educate the patient about the value of ceremony  for the bereaved. The memorial service (not necessarily religious, but simply a gathering of friends and family to remember the deceased) is an important step in the grieving process, and I try to help patients recognize that. 

 

Q.  What role can touch play in comforting a terminal patient?
A.  Again, this is culturally subjective. In some cultures touch is taboo, while in others  it is welcomed as an expression of loving care (I once had a male Nigerian patient who refused to be touched by a female nurse). This also varies from one individual to the next. One person might enjoy being touched, while another might find it intrusive. We should never assume to know what a patient wants in terms of emotional support. The answer is to simply ask. This is why we should make our end-of-life preferences known while we’re still healthy and able to communicate.  

[1] Balk, D. (Ed.), Handbook of thanatology (pp. 345–353). London: Routledge. 121- 122
[2] Balk, D. (Ed.), Handbook of thanatology (pp. 345–353). London: Routledge. 58
[3] Balk, D. (Ed.), Handbook of thanatology (pp. 345–353). London: Routledge.58