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Case: During a weekly Palliative Care Consult meeting, it was discussed that if D, 53-year-old woman with congestive heart failure, did not receive a heart transplant within several weeks to a few months at the most, she would probably die. I felt led to visit her, even though she was not on my normal unit rounds. On the initial visit, D was welcoming when I stopped by her room. After introducing myself as a Protestant staff chaplain, I inquired about her pain. D told me how uncomfortable she was and how she felt so limited by her physical condition. When I asked how she was coping with any other areas of suffering in her life, her lips quivered and her eyes filled with tears as she told of the burdens in her soul…deep, personal stresses in her life that continued to that very day. She had tearfully vented for about an hour, as I reflectively listened and reassured her that every word was confidential and I was there for her to listen, if nothing else.

After hearing her life’s trials, it was important to let her know, as a chaplain and pastor representing Christ’s church, that God could help not only with the treatment of the pain in her heart but also with the trauma of her suffering soul. I prayed for her and the medical team that would work with her and those behind the scenes to care for her, to harvest the new heart and skillfully transplant it into her body; as well as for the opportunity to deal with some of the issues of suffering that were plaguing her. Thankfully, the issues that she was suffering from began to be addressed within her family as the real possibility of D’s death triggered the process of reconciliation. As those issues began to be resolved and forgiveness and harmony blessed her life, hope and new meaning for her life made the anticipated pain of transplant more tolerable. D was sent home with a VAD long enough to appreciate how some of the stress that existed in the home before had dissipated. Within 48 hours D was back in for her heart transplant.

Surgery went very well, and D was out of the ICU with few complications. Yet, once D was on a step-down unit and dealing with post-operative pain in her body and the anxiety and depression that ensues after transplantation, she was troubled by her years of living as a sufferer. It was reassuring when she made her suffering known.

Thankfully, the issues were addressed by those that contributed to her suffering within her family, and positive changes brought meaning back into her life. D did embrace her new life with meaning and purpose, and as she healed from the pain of the transplant, it was made bearable by the liberation from suffering.

This was a process that was not resolved as in our modern media. It was assisted in by others in the Palliative Care Team, the Transplant Team, Unit Staff, Pastoral Care, Providence, and, of vital importance, D’s family members who realized D’s mortality and took ownership of her suffering and their contribution to the dysfunction in their household.

In many of the rooms of the hospital are laminated Comparative Pain Scales with 1 being expressed as :) demonstrating No Pain to 10 being Unbearable/Excruciating Pain. Modern technology addresses this pain well. Suffering of the soul, mind, psyche, what ever terminology you are comfortable with, also needs to be addressed with awareness and compassion. Everyone should participate. According to Thomas R. Egnew, “Suffering arises from perceptions of a threat to the integrity of personhood, relates to the meaning patients ascribe to their illness experience, and is conveyed as an intensely personal narrative.”

While the medical community has established procedures, protocols, and treatment plans that factor in typical emotional responses, suffering is personal, individual and commonly expressed as a narrative that needs the freedom and respect to be presented and the dignity to be acted on to reestablish meaning and significance. Pastoral Care is one piece of the solution, but by far, not the only piece in total patient care.

References:

1. Mayo Clinic on Chronic Pain; Mayo Foundation for Medical Education and Research. Kensington Publishing Corp., NY, NY. 1999

2. Egne, TR. Annals of Family Medicine; Suffering, Meaning and Healing: Challenges of Contemporary Medicine. LICSW. Volume 7 No 2. March/April 2009

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Case:

JD is a 66-year-old African-American female with cardiomyopathy and pulmonary hypertension who has been in and out of the hospital for the past two years. She had biventricular assist devices placed in August, 2007. Since then, she has experienced numerous setbacks and subsequently has been on and off the heart-lung transplant list. Most recently, she went to the OR to have her current LVAD replaced with a smaller unit. The procedure was aborted.

JD is divorced with no children. Prior to hospital admission, she lived alone, independently, in a one-story home. A supportive brother and sister live nearby. She is very sharp, speaks her mind, and has no patience for what she perceives as incompetence or “stupidity.” She expects staff to communicate with her directly and has no tolerance for ambiguity, mixed messages or superficiality. She has alienated several of the staff who don’t meet her expectations.

Over the past couple years, I have visited JD numerous times. In my first visit, she told me where to sit and told me to read certain passages of Scripture to her. (She has taught adult Bible study and has been very active in her church). I went along with her request (i.e., “order,”) and we actually had a stimulating theological discussion. Our visit ended with prayer. After this first visit, she no longer told me what to do. In subsequent visits, she shared her life story. I found that gently kidding around with her diffused her intensity. We spent many visits with her telling me about her life from childhood on, and we’ve shared much laughter. I enjoyed celebrating with her those memories that gave her joy.

In the last few months, her emotional ups and downs have become more pronounced. She was focused on getting a heart-lung transplant, which turned out not to be an option. She faced a surgery with a questionable predicted outcome, knowing she might die on the operating table. That surgery ended up being aborted. I have seen her at all-time emotional lows as well as in periods of bouncing back. Spiritually, she says she knows that God is with her; she has “no doubts” about that. She also says she must make all decisions, including life and death decisions, on her own – without God’s help.

Intervention:

The anchor in all my visits with her is prayer—prayer for guidance for her in decision making, prayer that lifts all her specific concerns and joys to God. We always hold hands in prayer, which she anticipates and appreciates. The healing aspects of this relationship are consistency and love. In the time we spend together, JD has shared precious, sometimes outrageously funny memories of her life. I have lifted up these memories to God in prayer with her, sometimes in a humorous way. My hope is that rather than compartmentalizing her spirituality she will allow God more and more into her decision making, that she will let God carry the weight of her burdens. This seems to be difficult for her, since she is so fiercely independent.

More and more, she seems now to be dealing with the prospect of her earthly life ending. While she remains trapped in a failing body with future prospects dim, she is now looking at her life with a sense of “well done, thou good and faithful servant” (Matthew 25:21) which is the ultimate healing.

Discussion:

Addressing quality of life is essential for patients with prolonged hospital stays. Patients on LVADS or BIVADS are physically restricted. While the body may be restrained, the mind is free to roam. Well-being must be viewed holistically, with emotional and spiritual needs being addressed. One researcher found that patient coping strategies include family support, religious convictions, and diversional activities, and that best way to support these patients is to establish a trusting relationship, foster independence and incorporate humor into their care. (Savage)

References:

1. Savage, Laura, RN, MSN (2003) Quality of Life among Patients with a Left Ventricular Assist Device: What is New? AACN Clinical Issues 2003 Feb. 14 (1) pp.64-72.

2. Savage, Laura, RN, MSN (1999) Life With a Left Ventricular Assist Device: The Patient’s Perspective American Journal of Critical Care Vol. 5, No. 5, pp. 340-343.

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Mr. C, a 68 year old widower with an implantable cardioverter-defibrillator (ICD) placed five years previously, was admitted to the hospital after his ICD discharged several times in one day. Each discharge was associated with severe pain, loss of consciousness, and heightened anxiety about experiencing future discharges. Evaluation of the ICD firing confirmed refractory ventricular tachyarrhythmias consistent with Mr. C.’s end-stage heart failure. Trials of anti-arrhythmic medications proved unsuccessful. The frequency of ICD discharges could not be reduced without deactivating the device (which would cause imminent death), yet leaving the ICD active would prolong Mr. C’s suffering.

When his primary medical team informed him about his medical condition and prognosis, Mr. C showed ambivalence about deactivating his ICD. He clearly stated to his health care team that he “did not want to live under these circumstances” and that “shutting off this pacemaker may be the best thing for me.” However, he did not like being left alone for fear his heart would stop and no one would be available to resuscitate him. His primary medical team consulted the Palliative Care Team (PCT) to discuss end-of-life options and goals with the patient and family. The PCT treated Mr. C’s anxiety with clonazepam and relaxation training, “supported” his ambivalence, and assisted with his discharge planning.

As the PCT continued working with Mr. C, it became apparent that Mr. C experienced tremendous remorse for “what I put my family through 20 years ago after my wife died.” Although his family openly stated that all was forgiven, Mr. C could not accept their reassurances – “I wish I could make it up to them.” The PCT initiated an intervention where Mr. C talked about his family members one at a time, and he described his happiest memory, what he appreciated, and what he loved about each one. His thoughts were written down, and the family was trained to continue the exercise until all family members were done. Mr. C was discharged with home hospice, and his family completed the PCT intervention at home. The day after Mr. C finished his individualized sentiments, he requested to have his ICD turned off. A representative from the ICD manufacturer came to Mr. C’s home and deactivated the ICD. Mr. C died two hours later in the comfort of his home and surrounded by his family.

Discussion:

ICDs are used to treat people at risk for sudden death due to ventricular tachycardia or ventricular fibrillation. They deliver an electrical charge to the myocardium during an arrhythmic event, and the “shock” allows the ventricle to resume a normal rhythm1. ICDs allow many people to enjoy a prolonged life without significant compromise to quality of life, but in cases of end-stage heart disease ICDs can cause significant physical suffering simply by doing their “job” - repeatedly normalizing arrhythmic events. Patient quality of life is further compromised by the severe anxiety associated with the fear of receiving a future shock2.

For patients with end-stage heart disease, deactivating the ICD can be a sound medical, ethical, and legal decision for them - albeit a difficult one. For Mr. C, his ambivalence about turning off his ICD was driven by his need for reconciliation with his family. Once this was achieved he calmly and peacefully made his decision to die. His case suggests that end-of-life decision making can be difficult for patients, and they may need time and guidance in completing their relationships with their loved ones before they can make the medical decision that is best for them.

ICDs can be deactivated in different ways depending on the urgency of the situation. In cases requiring immediate action (e.g., a patient is actively dying of end-stage cancer and his ICD fires causing the patient to go into convulsions), pacemaker magnets placed over the device deactivate it within seconds. In less urgent cases, the manufacturer and/or the electrophysiology service can assist with ICD deactivation. For patients at the end-of-life, turning off an ICD is similar to withdrawing a ventilator: the patient (or surrogate) has elected for comfort measures in lieu of aggressive medical care.

References:

1. Braun, TC, Hagen, NA, Hatfield, RE, Wyse, DG (1999). Cardiac pacemakers and implantable defibrillators in terminal care. Journal of Pain and Symptom Management, 18, 126-131. (No open access PDF)

2. Dunbar, SB, Warner, CD, Purcell, JA (1993). Internal cardioverter debrillator device discharge: Experiences of patients and family members. Heart Lung, 22, 494-501. (Open access PDF)

3. Quill, TE (1996). A midwife through the dying process: stories of healing and hard choices at the end of life. Baltimore, MD: Johns Hopkins University Press.

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Case:

Mrs. D. is a 55-year-old woman with a history of cardiomyopathy. She was placed on a Ventricular Assist Device (VAD) and awaited heart transplant in the hospital for over 50 days. She received the heart transplant and remained in the hospital for about a month post-transplant before moving to an outside facility. Her husband was her main support system in this time, and the Palliative Care Team was consulted for support as well. When asked by the Palliative Care doctors if she would like a visit from the music therapist, Mrs. D. enthusiastically responded “Yes!”

During our first Music Therapy session, Mrs. D. shared that she was a “Sweet Adeline” (a member of a barbershop quartet) and she sings the “Lead.” She led us all in singing every gospel tune we could come up with that day, and played percussion instruments as well. She even sang to staff as they came into the room. Singing is a great tool to use in music therapy because it requires deep breathing, and produces a relaxation response. It is also great for respiratory therapy, and the percussion playing is good for physical conditioning.

Shortly thereafter, I received a phone call from Mr. D., whom I had not yet met. I learned that they had received bad news Mrs. D. was beginning to reject her new heart. He requested I come at my earliest convenience to see Mrs. D., that she needed Music Therapy. When I arrived, I found the two sitting side by side on the hospital bed. I set up in front of them, and we began with requested gospel tunes.

At a time of crisis, people often look for spiritual support, and music is one way people can express their spirituality and feel comforted. Mr. D. began to cry. As the tears flowed down his face, he sang “I once was lost, but now am found, was blind, but now I see.” I once again played every spiritual song I know to support Mr. D through his grief and allow him to safely cry. As Hogan (1999) documented, “music therapy was often experienced spiritually, reaffirming participants’ acceptance of dying, or allowing them to think of life thereafter, awaken to life’s meaning and/or reflect on the fortunate experiences of having shared love and kindness.”

Using all live music in this context is important because the music can be altered to meet the expectations and needs of the patient/family; e.g. faster, slower, louder, softer, changing the instrumentation, and allowing the patient to be the leader or the follower, the director, the performer, or the audience. They are allowed as much choice and control over the situation as they need, because often times they have little choice or control over what is happening to their bodies or the disease process.

As we moved on to oldies, Mr. D. stopped crying and they both started talking about their early romantic days together, how they first met, their children, and grandchildren. The music evoked memories from long ago and facilitated a life review for the couple. They were able to recall memories connected to songs, their first dance, their wedding song, and favorite songs of their children.

Musical life reviews are a way for people to celebrate their lives, their love for each other, and their family traditions. Just as certain olfactory sensations can trigger memories and emotional reactions, auditory sensations (music) are linked to memories and emotions, making the life review process seamless in musical form. Mrs. D. was discharged to another facility a few days later, and I suspect she and Mr. D. continue to sing together, using music to add quality to their lives.

References:

1. Hilliard, R. (2005). Hospice and palliative care music therapy: a guide to program development and clinical care. Cherry Hill, NJ: Jeffrey Books.

2. Hogan, B. (1999). The experience of music therapy for terminally ill patients: A phenomenological research project. In R. R. Pratt & D. E. Grocke (Eds.) MusicMedicine 3: musicmedicine and music therapy: expanding horizons (pp. 242-254).

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References