Huntington's Chorea, Leukemia at End-of-Life, G-Tubes, Open Access to Hospice

Abstract

This feature is based on actual questions and answers received and responded to by the Hospice Foundation of America (HFA). This is a service provided for families and support group members of patients with advanced disease by William M. Lamers, MD, HFA Medical Consultant a member of this Journal's Editorial Board. Effective ways to communicate with families and support groups of patients with advanced disease are presented. In this issue, queries and responses are presented addressing Hubtington's Chorea, Leukemia at end-of-life, the use of G-tubes, and open access to hospice care.

Palliative care in advanced Huntington’s disease: a scoping review

“…Vomiting can be caused by food triggers, fear of choking or other problems causing volitional vomiting and incomplete mouth closure [ 9 , 21 ]. PEG feeding is rarely used in advanced-stage patients [ 10 , 22 , 24 ]; there is an ethical debate about the use of PEG feeding [ 30 , 31 ], which should be considered individually [ 9 , 10 , 21 , 24 , 25 , 27 ].…”

“…Referral to palliative care of HD patients in the USA is associated with a higher mortality class, DNR status, aspiration pneumonia, and respiratory failure [ 55 ]. Considering the total hospice population, HD patients represent less than 1% [ 13 ], but indications and prediction of prognosis for hospice enrollment or referral to palliative care may be unclear in case of HD [ 13 , 23 , 31 , 38 ].…”

“…It is unclear whether tube feeding prolongs survival time for HD [ 25 ], which also applies to Parkinson’s disease or related disorders [ 59 ]. Additionally, tube feeding may also lead to discomfort [ 60 ] and may not be applied because of ethical considerations [ 17 , 29 – 31 ]. More research is needed to better understand the different perspectives in this debate.…”

“…A ‘good death’ is important for both patient and family, and most important is fulfilling wishes regarding the dying process [ 64 ], especially since witnessing a loved one in the final stages proves to be important for the EOL choices they will make later on themselves [ 30 , 40 – 42 , 44 , 48 ]. Recommendations for deep sedation as an alternative to euthanasia should be discussed, as suggested in a survey [ 43 ], but in our opinion it is not preferred as the recommendation, according to most guidelines for continuous deep sedation, is to start only in the last days or weeks [ 65 , 66 ], and the terminal stage is difficult to predict in HD [ 13 , 23 , 31 , 38 , 50 ].…”

“…Recognizing symptoms in the end-of-life stage is important for adequate and timely referral to palliative care (units) and to avoid unwanted hospitalizations. Indications for referral to palliative care are not clear [ 16 ], and are not studied in HD [ 13 , 23 , 31 , 38 , 50 ], which may lead to poor recognition of need for hospice benefit, also in children with pediatric HD where EOL conversations may guide improvement of quality of life and dying by avoiding hospitalization [ 52 , 53 ]. In HD, the strongest predictor for nursing home admission is advanced motor impairment.…”