Hospice Chaplains and End Stage Dementia Patients: A Best Practice

Categories: Care.

CPE training at Emory and Duke, 14 years in an acute care setting, and board certification did not prepare me for hospice. Or, perhaps more accurate, did not prepare me for the type of patient I would most encounter in my hospice setting: the dementia patient.  

Roughly 80 percent of my patients are diagnosed with end-stage dementia or Alzheimer’s disease.  If they can talk, they rarely, if ever, make sense and often can only speak a few words.  If they can make eye contact, they rarely, if ever, maintain eye contact.  If they can smile, it is rare to know what made them smile. Most are totally dependent on others for their ADLs and many are confined to bed or a recliner chair.  Some can respond to sound and/or touch and some cannot.  

Most of my training and experience centered on cognitive pastoral care wherein the chaplain and the patient engage in conversation using words and ideas in an attempt to find and make meaning in the midst of the crisis at hand.  Silence was used, but more as a “Zen-thing” to enhance or frame the cognitive process of meaning-making.  I am very comfortable with cognitive pastoral care and the use of silence, but cognitive care is basically worthless with someone whose mind is mostly gone and silence is often the barrier that needs to be broken in order to connect with the dementia patient.  Working with end-stage dementia patients has been for me the most difficult part of my switch from an acute care setting to hospice care.

Don’t get me wrong. In the acute care setting, I did encounter dementia patients or patients with a significant brain injury.  And generally, for those one or two encounters, my pastoral care was sufficient.  But in hospice, I have multiple visits with the same patient over the course of their time on service, and on many days, I see multiple patients with end-stage dementia.  In order to provide quality spiritual care for my patients, I have been forced to find a best practice for dementia patients.  This best practice also had to provide good self-care, since working continuously with end stage dementia patients can lead to burn out due to a lack of feedback.  

I first developed a base-line understanding or definition of spiritual care. Many definitions of spirituality talk about the process of meaning-making and finding purpose.1   If spiritual care is defined solely in terms of facilitating this process of meaning-making and purpose-finding, then it is extremely difficult to assert that I provide spiritual care for end-stage dementia patients.  After all, these patients have neither the cognitive faculties nor the sense of self to engage in meaning-making and purpose-finding.

A Sense of Connectedness

But spirituality is not restricted only to meaning-making and purpose-finding.  Spirituality also includes the experience of connectedness.  That is, people experience a sense of connectedness to the moment, to self, to others, to nature, and to the significant or sacred.2  Relying on this aspect of spirituality, I provide spiritual care to the degree I enhance or facilitate a sense of connectedness to something in the dementia patient.  A sense of connectedness to what, however, cannot always be determined with certainty; once again the end-stage dementia patient lacks the ability to make this determination.  

Once we remove from spiritual care the processes of meaning-making, purpose-finding, and experiences of connectedness to, all we have left is simply connection.  In other words, spiritual care for end-stage dementia patients involves making connections with them.  This may be an experience of connectedness to you as the spiritual care provider, or to the moment, or to the sacred, but it is doubtful the dementia patient would understand it in these terms.  Also, as a result of this connection, the patient may experience some additional sense of meaning or purpose, but assessing what that may be is beyond our discernment as well as theirs.  So best practice in the provision of spiritual care to end-stage dementia patients is all about making a connection with them.  In order to illustrate this, we will take the case of Anne.

Anne was a 96-year-old widow listed as Baptist and admitted with end-stage Alzheimer’s.  Anne had little social support from her family and friends and had no support from her faith community.  Anne no longer talked, except for a few non-sense sounds. She rarely, if ever, made eye contact. Anne was confined to a wheel-chair and due to a lack of strength, rarely lifted her head.  She was dependent on others for all her ADL’s (eating, dressing, and bathing).  The one thing she did almost continuously was to reach out with her right hand to touch and pick at things.  She was extremely frail.  

I visited Anne twice a month for nearly a year and a half.  Her family had informed me that Anne’s faith was once very important to her and that she liked old church hymns.  My pastoral care generally consisted of playing recordings of old church hymns and singing along with them and then closing with prayer.  Receiving no feedback, as is common with these patients, I trusted that my pastoral presence along with the hymns and prayers was providing some sort of spiritual comfort for her.  But then one day things changed: I made a connection with her.

We were sitting as usual with me in front of her and on her level, so that if she did raise her head and look, I would be right there. I was playing “In the Garden” by Alan Jackson and singing along with it.  As usual, I placed my hand in a position so that Anne could touch my hand and rub it.  But then things changed. Instead of me sitting there passively with Anne touching and rubbing my hand, I gently took hold of her hand and began to move it rhythmically to the music as if we were dancing.  At first it was awkward as Anne seemed to resist my lead, but after a few measures, she began to follow my lead and the movement smoothed out.  I also began to relax into the present moment. Then, unexpectedly, Anne slowly lifted her head, looked me straight in the eyes, and then with a twinkle in her eyes she smiled beautifully at me.  I smiled back.  We made a connection!  Anne’s spirit touched my spirit.  After a few moments, Anne’s gaze shifted, she lowered her head, and the hand movement just became mere movement again—and the moment was gone.  But for that moment, I know our spirits had connected and I had provided spiritual care that brought her comfort and joy.  

Begin a Best Practice

Out of this experience, I have developed the following procedure that may constitute the beginnings of a best practice for end-stage dementia patients.  I have used this procedure on other similar patients and have had similar results—though not always, as can be expected for this patient-population.

• First, I try to find out from the family what kind of music the patient likes and then I download something in that genre. Studies have indicated that dementia patients will respond to music long after their ability to respond to other things has ceased.3   I have examples of a wide variety of genres on my smart phone.  I avoid arrangements that are “too busy,” such as being overly orchestrated.  I also avoid selections that follow an odd, unfamiliar, or eccentric arrangement.  For example, if the patient likes old church hymns, which is very common among my patient-population here in Georgia, then I want something that is musically simple, that sounds like the hymns they may have sung in church, and that has vocals the stand out and are clear.  A good example is Alan Jackson’s Precious Memories.  

• Second, if it is music with words, then I try to sing along with it, even if I sound bad.  I have found with other patients who do not have dementia or for whom dementia is not their primary diagnosis, my singing somehow gives them permission to sing along or to mouth the words or to just make sound.  This “singing along” adds a communal dimension and a heightened energy to the music that playing it alone does not have.  It also engages more of me, which means that more of me is present.

• Third, when I sit with the patient, I try to position myself so that I am in front of them and on their level. This is a fairly common practice with dementia patients.  They often cannot see very well peripherally, and if they do open their eyes or look up, you want to be right there in order to facilitate connection.  This further requires my being present at all times.  It is easy to drift off if the patient is not actively engaging you at all times.  Positioning yourself correctly in relation to the patient enhances remaining present with the patient.

• Fourth, as the music is playing and I am singing along with it, I try to provide some sort of gentle contact with the patient.  This may be holding their hand or laying my hand on their arm.  This is not passive contact, however; instead, it is active contact with the intention of enhancing the rhythm of the music. I call it “rhythmic touch.” If they are able to move the arm, then I move the hand and arm in rhythm to the music as if we are dancing.  If they cannot move their hand or arm, then I gently tap the rhythm of the music on the hand or arm.  Again, this rhythmic touch also enables me to be more present with the patient.

The results of using this procedure will vary from one patient to another and will vary from one visit with the same patient to another visit with that patient.  But I have found that this combination of familiar music, “communal” and energetic singing, proper positioning, and rhythmic touch will often result in establishing a connection with the patient that reaches through their dementia and into their spirit.  Generally it is a fleeting moment, but a moment can also be an eternity when it occurs in the spirit. I have also found that this practice keeps me more present and engaged with a type of patient—the dementia patient—with whom caregivers often experience burn out.

Spiritual care best practice with end-stage dementia patients involves a coming together of the patient and the chaplain into a shared moment of connection.  This means that the chaplain has to find a way to bring the patient into the present moment with awareness and once the patient arrives in that present moment, the chaplain needs to be sure he or she is also present.  When this occurs, there is a shared intersubjective space between them that creates its own meaning 4—whatever that may be exactly for the patient.  Music, through its ability to engage multiple senses (hearing, singing, and movement) and through its ability to demarcate time in the here and now through rhythm, can, when shared, bring the chaplain and the patient into a shared moment. That shared moment is the experience of connectedness; it is spiritual; it is quality spiritual care.

What has been your experience when using music with dementia patients?

1. Christina Puchalski, Betty Ferrell, Rose Virani, Shirley Otis-Green, Pamela Baird, Janet Bull, Harvey Chochinov, George Handzo, Holly Nelson-Becker, Maryjo Prince-Paul, Karen Pugliese, and Daniel Sulmasy, “Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference,” Journal Of Palliative Medicine, vol.12 (Number 10, 2009), pp. 885-904.
2. Ibid.
3. Oliver Sacks, “Wired for Sound,” at  http://www.oprah.com/health/Oliver-Sacks-Finds-the-Bond-Between-Music-and-Our-Brains (Retrieved on 1/28/2013). See also, Ibid., Musicophilia: Tales of Music and the Brain (New York: Vintage Books, 2007), pp. 371-385.

4. Pamela Cooper-White, Shared Wisdom: Use of the Self in Pastoral Care and Counseling (Minneapolis: Fortress Press, 2004), pp. vii, 25.

About the Author:
Mark LaRocca-Pitts, PhD, BCC, works as a staff chaplain with Crossroads Hospice of Atlanta. Mark has published articles on professional chaplaincy in a variety of journals and has presented workshops and webinars in a number of venues.  Mark has served the APC as a member of the Quality Commission, the History Committee, the Communications and Publications Committee, and on the task forces that developed the Standards of Practice for acute care and long term settings.  Mark currently serves as the APC State Rep in Georgia and resides in Atlanta, GA with his wife, Beth, and twin children, Ellie and Joe.

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