PERT Program

Tip of the Month: July 2003


Spiritual Care At The End Of Life:
"Where Do I Begin?"


Talking about spirituality at the end of life is difficult. Doctors think it's difficult. So do nurses. Family members sometimes have difficulty. Nursing assistants may believe they aren't allowed to talk about such things. Even the resident may struggle with sharing beliefs or concerns out loud.

Despite the difficulties in talking about it, addressing the spiritual nature of our residents is an important aspect of providing care at the end of life. This month we will look at some ideas on how to ease our way into conversations about spirituality.

Spirituality has many definitions, but in general refers to those aspects of a person's views and beliefs that are concerned with meaning, hope, transcendence (that is, a sense that there is a power or reality beyond the human experience), purpose, and connection. When reflecting on this list of words, it's easy to see how facing the end of life brings questions and thoughts of spirituality to the minds of our residents.

Spirituality is different than religion. Religion is the organized, often institutionalized beliefs and practices that express a person's spirituality. There are many people, however, who have a strong sense of spirituality without belonging to a specific religion. Spirituality is broader than religion, and includes the relationships or connections with the self, others, nature, and God or other power. Some residents may find transcendence in art or music. Others find meaning in nature or family relationships. Still others identify God or a higher power as the source of their strength and purpose. As care providers, it is important that we recognize all of these experiences of spirituality as valid. Our responsibility is to affirm and support the resident's beliefs without imposing our own beliefs. As one author states, "It is important to keep in mind that the work of giving spiritual care occurs originally and essentially within the caregivers."1 (p. 25) In order to recognize the spiritual needs of another person, we need to be familiar with our own views and beliefs.

So how do we begin to address our residents' spiritual needs at the end of life? A starting place is to formulate questions that give the resident permission to talk about things of a spiritual nature. As care providers we know the importance of asking open-ended questions and taking time to actually hear the response. We can start by asking questions that begin with "who," "what," "when," or "tell me about..." Avoid using questions starting with "why," because these queries can seem blaming or negative (e.g., "Why do you believe that?") When we pose questions with genuine care and patiently await a response, we set the stage for trust and sharing. We can then begin to offer comfort, assist in practical activities such as writing down a memory, or make an appropriate referral to a specialist in spiritual care.

Listed below are some suggested assessment tools and sample questions that may help you "get the ball rolling" in conversations about spiritual beliefs or needs. Assessment tools are one way to gather information in an organized way, and are often used when the resident is admitted to the facility.


FICA
The first assessment tool is one that Mark Bonnema, MDiv, used when creating the PERT Curriculum module on Spirituality and is entitled FICA.2 The FICA is organized into 4 topics: Faith, Importance/Influence, Community, and Address.

Some questions you might ask in each of the categories are:
Faith:
  • What are your spiritual or religious beliefs?
  • Do you consider yourself spiritual or religious?
  • What things do you believe in that give meaning to your life?
Importance/Influence:
  • Are your spiritual beliefs important in your life?
  • How do they affect how you view your problems?
  • How has your religion/spirituality influenced you during this illness?
  • What role might your religion/spirituality play in resolving your concerns?
Community:
  • Are you part of a spiritual or religious community?
  • Is this supportive to you? How?
  • Is there a person or group of people you really love or who are really important to you?
Addresss:
  • How would you like me to address these issues in your care and in this setting?



HOPE
Another assessment tool uses the acronym HOPE:3
H: Sources of hope, meaning, comfort, strength, peace, love, and connection:
  • We've been discussing your support systems. I was wondering, what is there in your life that gives you internal support?
  • What are your sources of hope, strength, comfort, and peace?
  • What do you hold on to during difficult times?
  • What sustains you and keeps you going?
O: Organized religion:
  • Do you consider yourself part of an organized religion?
  • How important is this to you?
  • What parts of your religion are helpful or not so helpful to you?
  • Are you part of a religious community?
P: Personal spirituality/practices:
  • Do you have personal spiritual beliefs that are independent of organized religion? What are they?
  • Do you believe in God? What kind of relationship do you have with God?
  • What parts of your spirituality or spiritual practices do you find most helpful to you personally? (e.g., prayer, meditation, reading scripture, attending religious services, listening to music, hiking, being in nature)
E: Effects on medical care and end-of-life issues:
  • Has being sick affected your ability to do the things that usually help you spiritually? (Or affected your relationship with God?)
  • Is there anything that I can do to help you access the resources that usually help you?
  • Are you worried about any conflicts between your beliefs and your medical situation/care/decisions?
  • Would it be helpful for you to speak to a chaplain or community spiritual leader?
  • Are there any specific practices or restrictions I should know about in providing your care? (e.g., dietary restrictions, use of blood products)
  • If the resident is dying: How do your beliefs affect the kind of care you would like us to provide over the next few days/weeks/months?


Another approach, particularly after you have established a relationship with a resident, is to use topic areas to guide your thinking about spiritual care. Topics such as hope, meaning, and connection provide a rich context in which to get to know your resident more intimately.

Some questions you might think about:
Based on these thoughts, you can formulate questions that will encourage conversation about spirituality, often through the telling of stories. One of the most significant gifts you can give your resident is your ability to receive and enjoy their stories.

It is challenging to approach the topic of spirituality with residents. However, using assessment tools or bearing in mind topic areas that lead to conversations of a spiritual nature will assist all of us to provide more comprehensive care at the end of life.

What works for you to engage your resident in these types of conversations? Use the PERT Program contact page to send us an example or a case scenario and we'll post it on the PERT website.




References
  1. Dunne T. Spiritual care at the end of life. Hastings Center Report. 2001;31(2):22-26.
  2. Puchalski C, Romer AL. Taking a spiritual history allows clinicians to understand patients more fully. J Pall Med. 2000;3(1):129-137.
  3. Anandarajah G, Hight E. Spirituality and medical practice: using the HOPE questions as a practical tool for spiritual assessment. American Family Physician. 2001;63(1):81-89.