Hospice of the Comforter

Amyotrophic Lateral Sclerosis (ALS) can be devastating for patients and their families as they face the progressive nature of this neurological disease. The physical decline, respiratory compromise, nutritional deficiencies, loss of communication, and emotional changes require ongoing supportive care. Hospice services are helpful when the cumulative changes of end stage ALS necessitate more frequent assessments and comfort-care interventions. The following guidelines can be useful when determining when to initiate a patient-physician discussion about hospice care:

The Operational Definition of “End of Life” in ALS: 6 “Triggers” for Initiating Discussion*

1. The patient or family asks – or “opens the door” for end-of-life information and/or interventions (elicited or spontaneous, verbal or non-verbal), or

2. Severe psychological and/or social or spiritual distress or suffering, or

3. Pain requiring opiates, or

4. Dysphagia requiring feeding tube, or

5. Dyspnea or symptoms of hypoventilation, forced vital capacity at 50% or less, or

6. Loss of function in two body regions

After a hospice referral is made, a nurse will visit the patient at his residence to perform an assessment and explain hospice services. The nurse will consult with the hospice physician about the patient’s appropriateness for hospice care. If the patient, his physician and the hospice physician are all in agreement, hospice services can usually start that day. Mary’s story below may best demonstrate how the hospice team can then serve the needs of someone living with end-stage ALS:

Mary was 52 years old and had been diagnosed with ALS for two years. She was single, lived alone and had retired from teaching. Her family consisted of only one cousin who lived out of state. She knew that a time would come when she could no longer live safely at home on her own. So, she visited area skilled nursing facilities to determine which would be her preference.

She entered the facility when she was no longer able to walk and provide for her own activities of daily living. Soon thereafter, she developed breathing and swallowing difficulties and was referred for hospice care. She told the hospice team that she wanted to be able to maintain control over her care and stay in contact with her many friends and her cousin.

The hospice social worker provided needed counseling and support for Mary and advised her of Advance Directive planning. Mary completed her Living Will and named her cousin as her Health Care Surrogate. A family meeting was arranged so Mary and her cousin could both ask questions of the hospice staff and be educated in the expected course of Mary’s illness.

In the course of her care, Mary’s hospice nurse communicated with the physician so she could obtain needed medications for discomfort, shortness of breath, depression, and a urinary infection. In addition, a change in her diet plan was required so Mary could more easily swallow foods. The hospice physician visited Mary to assess her status and recommended further palliative interventions to help improve Mary’s comfort.

The hospice nurse arranged for a referral for an occupational therapist who provided assistive devices for eating and using the phone. The social worker arranged for communication devices that that could help Mary stay in touch with her cousin and friends. The chaplain visited or called every week to provide prayer and support per her request. An assigned volunteer who was also a retired teacher visited Mary weekly and took her outside in her wheelchair so she could sit in the garden while they talked and reminisced. The hospice educator provided a CEU presentation for the facility staff on ALS Care.

As Mary’s respiratory condition worsened, she refused a ventilator but was agreeable to using C-PAP provided by hospice. In her last days of life, Mary’s cousin stayed with her in her room. She and the SNF staff were given ongoing education about the dying process and how to best provide care. The hospice chaplain officiated at Mary’s memorial service. Bereavement follow-up visits, phone calls and mailings were provided to Mary’s cousin for over one year.

 

^{* “Completing the Continuum of ALS Care: a Consensus Document”, 2004,  produced by Promoting Excellence in End of Life Care, a National Program of the Robert Wood Johnson Foundation, www.promotingexcellence.org}