Caring for the Whole Person and Family

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Welcome

Welcome to the Narrative Patient Centered Care online module. This Module is presented in three parts:

I. Introduction to Narrative Patient Centered Care
II. Communication Skills for Narrative Patient Centered Care
III. Caring for the Whole Person and Family


In Part III, Caring for the Whole Person and Family, you will observe Wendy’s follow-up visit with her primary care provider and her partner, Oscar and explore the dimensions of whole person care, including spirituality.

Learning Objectives:

    After completing Part III, you will be able to:
  • Explain the concept of Whole Person Care.
  • Reflect on your own comfort with discussing religion and spirituality with patients and family.
  • Use the 7 Questions of Narrative Patient Centered Care to address whole person needs – physical, emotional, social, cultural and spiritual – of patients and families.


". . . That business of the spirit, of the non-material self, of sympathy for and knowledge of others is the most important thing: in how we love, in how we live, and in what matters."

Colm Tóibín, writer and novelist


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Treating the Whole Person

Each time patients who are seriously ill experience a medical incident they are confronted with their mortality and the associated issues of meaning and grief that are critical dimensions of the whole person experience.

Whole person care seeks to comprehend and address the physical, emotional, social, cultural and spiritual dimensions of the person to relieve suffering and promote healing.

Whole person care is focused on adapting to a changed life and draws on the inner resources of the patient and family with the patient in control. Whole person care complements biomedicine which is focused on preserving life.

Hutchinson T 2011


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Intoxicated by Illness, Anatoly Broyard

... it sounds trite, yet I can only say that I realized for the first time that I don't have forever....

In the first stages of my illness, I couldn't sleep, urinate or defecate - the word ordeal comes to mind. Then when my doctor changed all this and everything worked again, what a voluptuous pleasure it was. With a cry of joy I realized how marvelous it is simply to function. My body, which in the last decade or two had become a familiar, no longer thrilling old flame, was reborn as a brand-new infatuation.

I realize of course that this elation I feel is just a phase, just a rush of consciousness, a splash of perspective, a hot flash of ontological alertness. But I'll take it, I'll use it. I'll use everything I can while I wait for the next phase. Illness is primarily a drama and it should be possible to enjoy it as well as to suffer it. I see now why the romantics were so fond of illness - the sick man sees everything as metaphor. In this phase I'm infatuated with my cancer. It stinks of revelation.

As I look ahead, I feel like a man who has awakened from a long afternoon nap to find the evening stretched out before me. I'm reminded of D'Annunzio, the Italian poet, who said to a duchess he had just met at a party in Paris, ''Come, we will have a profound evening.'' Why not? I see the balance of my life - everything comes in images now - as a beautiful paisley shawl thrown over a grand piano....

Read the full essay in the New York Times


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What is Healing Patient Care When There is No Cure?


Think of a loved one or a patient with serious illness who you believe received good medical care that provided healing, even when medicine did not have a cure for their disease. What made their care “good”? How did you, or other clinicians provide healing? What were the signs that healing was happening?

Type your thoughts in the text box below:




Click on the button up to see what most patients and families say.



A. Doorenbos, pain module


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Skills for Whole Person Care

The 7 Questions presented in Part II will help you gain a deeper understanding of the whole patient and their family and ensures that the treatment you provide supports a meaningful life for everyone involved.



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The transcendent or spiritual dimension

Reflect a moment and rate yourself.


    I feel uncomfortable discussing patient’s spiritual and religious concerns and avoid such conversations.
  • Never
  • Rarely
  • Sometimes
  • Almost always
  • Always








    Skills for discussing spiritual and religious issues with patients and families:
  • Ask for clarification about their concerns, beliefs and needs
  • Make a connection by:
    • listening carefully
    • acknowledging concerns
    • exploring emotions
    • offering empathy
  • Identify common goals and values
  • Mobilize sources of support for them

Lo, Ruston, Kates, et al. 2002


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Whole Person Care for Wendy

    Following Wendy’s initial visit, her primary care provider began an aggressive pain management regimen. By the third day:
  • Wendy’s pain is averaging 3/10.
  • She is using her breakthrough morphine IR less than once a day and never at night.
  • Her sleepiness is improving and her bowels are soft and regular.
  • After all these weeks equating pain with her cancer, she can’t believe she still has cancer.

While Wendy’s nociceptive pain is controlled, she continues to describe a different kind of “pain” that doesn’t respond to her pain medications. It is a deep ache in her chest made worse when she thinks about what will happen to her grandchildren and her relationship with Oscar.

Treatment of nociceptive pain in cancer patients is a critical first step in addressing whole person pain. Continued support in dealing with the emotional, psychological, cultural and spiritual concerns of patients with advanced illness is also critical for treating the whole person’s pain.


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Whole Person Care-Setting a Safe Context: Compare Two Approaches

At the end of the last visit the clinician asked Wendy if Oscar could participate in their next meeting in order to find out his perspective of the situation and to help the two of them work together.

Observe the differences in the attempts to set the context for the follow-up visit with Oscar and Wendy in the videos below. After watching each video, you will be asked to identify the communication skills you observed.

Standard Practice

Check all that apply and then click to see what we observed.

The primary care provider effectively:

  • Explained the reason for the visit
    • The clinician outlined the reason for the visit, but the agenda was focused on the medical plan instead of first eliciting the patient and family story with which to base this plan.
  • Asked permission to proceed
  • Invited Oscar to share his story
  • Explained the importance of knowing his story
  • Explained how knowing his story will allow the healthcare team to provide better care




Narrative Approach

Check all that apply and then click to see what we observed.

The primary care provider effectively:

  • Explained the reason for the visit
  • Asked permission to proceed
  • Invited Oscar to share his story
  • Explained the importance of knowing his story
  • Explained how knowing his story will allow the healthcare team to provide better care





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Eliciting Oscar’s Story: The 7 Questions

Quite a lot happens during the three-way discussion with Wendy, Oscar and the primary care provider. Use the check list below to identify the communication skills that that were most effective in this interaction.

Check all that apply and then click to see what we observed.

Wendy’s primary care physician uses the Seven Questions to ask Oscar about:

  • His personhood and daily life
  • His perspective on the situation
  • Hopes
  • Concerns
  • Past experiences with serious illness
    • Though not asked directly, when the clinician used the skill “anything else?” to ask Wendy at the end of the conversation, she brought up her desire to die at home. This allowed space for Oscar to reference Wendy’s daughter’s illness and increased his awareness of how this is shaping Wendy’s preferences.
  • Family or others who will support him and Wendy
    • Although the clinician does not ask about family support directly, the support of their faith community comes out in the encounter and the clinician uses a simple reflection to highlight the importance of this source of support.
  • Sources of strength and/or spirituality
    • Similar to above, faith organically comes out in the conversation when the clinician asks Oscar how he sees the situation. The clinician uses several simple reflections to show Oscar and Wendy he acknowledges this important value.

    When Oscar mentions his belief in miracles, Wendy’s primary care provider:

  • Explores what a miracle looks like to Oscar
  • Expresses alignment by saying he is hoping for a miracle also
  • Respects the importance of Oscar’s belief in a miracle
  • Uses simple reflections to summarize Oscar’s belief in the miracle
  • Mobilizes sources of spiritual support for them




The 7 Questions are not designed to be asked in a linear order, nor will every question be asked at every visit.

With experience, you will adapt the skills for Narrative Patient Centered Care to your own style and modify them as the situation requires.

Think of them as individual tools in a toolbox, and as your skill develop you will be able to identify what tool works best for which situation.

As you will see, Wendy’s clinician uses some, but not all, of the Seven Questions as well as tools discussed in Part II.

You will also notice that Oscar answers some of the Seven Questions when a different Seven Question was asked.

Wendy’s clinician does not shy away from discussing Oscar’s spiritual beliefs. He acknowledges Oscar’s beliefs as important which demonstrates alignment with Oscar’s values, even if the clinician does not subscribe to the same values.


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Summarizing and Confirming: Compare Two Approaches

Observe the differences in the attempts to summarize and confirm Oscar’s story in the videos below. After watching each video, you will be asked to rate the clinician’s use of Narrative Patient Centered communication skills.

Standard Practice


Rate the approach used by the primary care provider in summarizing and what he has learned about Wendy. Then click to see what we observed.


1 = Highly biomedical and 5 = highly narrative.


    1. Identified and summarized Oscar’s story, values and concerns
    Biomedical Practice --------------------Narrative Approach
  • 1
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  • 5


    2. Integrated Wendy and Oscar’s story, values and concerns
    Biomedical Practice --------------------Narrative Approach
  • 1
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  • 5


    3. Let Oscar know he had been heard
    Biomedical Practice --------------------Narrative Approach
  • 1
  • 2
  • 3
  • 4
  • 5


NOTE: Participants will click We observed to see the our rating in green.




Narrative Approach


Rate the approach used by the primary care provider in summarizing and what he has learned about Wendy. Then click to see what we observed.


1 = Highly biomedical and 5 = highly narrative.


    1. Identified and confirmed Oscar’s story, values and concerns
    Biomedical Practice --------------------Narrative Approach
  • 1
  • 2
  • 3
  • 4
  • 5


    2. Integrated Wendy and Oscar’s story, values and concerns
    Biomedical Practice --------------------Narrative Approach
  • 1
  • 2
  • 3
  • 4
  • 5


    3. Let Oscar know he had been heard
    Biomedical Practice --------------------Narrative Approach
  • 1
  • 2
  • 3
  • 4
  • 5


NOTE: Participants will click We observed to see the our rating in green.





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Summary

In Part III, Caring for the Whole Person and Family, you observed Wendy’s follow-up visit with Oscar and her primary care provider. You saw that managing Wendy’s whole person care included both nociceptive pain control and attention to the other important issues that were causing her distress.

The communication skills learned in Part III were used to deepen and extend the narrative approach during the follow-up visit, including spiritual concerns.

Part III allowed you to see how the 7 Questions can be helpful for both patients and their families, to deepen our understanding of their story and integrate the patient, family and medical narrative.



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Further Reading

Hutchinson T. “Whole person care. In: Whole Person Care: A New Paradigm for the 21st Century. Hutchinson T, Ed. New York: Springer 2011.

Lo, Ruston, Kates, et al. Discussing Religious and Spiritual Issues at the End of life: A Practical Guide for Physicians. JAMA Feb 13, 2002-Vol 287, No. 6: 749754.


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