Hospice Care Or Palliative Care In Huntington Disease

In the terminal stages of HD due to the combination of dementia and loss of motor control an individual requires assistance with almost all activities of daily life. This is because at this stage the individual is unable to ambulate, talk, and even having difficulty in swallowing may be causing aspiration pneumonia. Chorea that prominent in the early and middle course of the disease might gradually attenuate toward the terminal course of the disease instead replaced by rigidity and hypokinesia. But sometimes, the chorea worsen as the individual moves toward the terminal stages of the disease.

Although the individual might become mute and bed-ridden but many seem to retain some personality and interactiveness in the terminal stages of HD. As the disease progress in an insidious manner thus it is difficult to ascertain if the individual has become hospice-appropriate. The characteristic to describe an individual in late stage of HD such as demonstrating medical instability. In others may develop “terminal agitation”, an unexplained escalation in agitation, crying or screaming. Therefore before the terminal stage of HD arrives, the family of HD should create a Living will or Advance Directive, which clearly described how they want care to be provided during the terminal stage of the illness. The individual with HD also should make clear who will make medical decision on his or her behalf in the early stage of the disease if they are no longer able to make decision because of communication difficulties or dementia or both.

At –risk children may having difficulties to make decisions for their loved one based on their own fears as well as tend to escape their perception of their own future. The goals of hospice care are just as for people with other life-limiting illnesses, to guide the affected individual and family through the dying process with comfort and dignity. There are a total of 25 hospice NGOs providing free-of- charge palliative care service throughout Malaysia. Hospice or palliative care uses interchangeably in Malaysia with the aim to provide comfort to the patient who has serious or life threating illness from the time of diagnosis and throughout the course of illness. It consists of multidisciplinary team consists of doctor, nurses, physiotherapists, occupational therapists, dietitians, pharmacist and social workers. It provides a continuum of care that addresses the unique needs of specific individual that facing challenging times owing to the problem associated with the life-limiting illness.

The continuum of care encompass various setting such as hospital, outpatient clinic, nursing homes, dedicated palliative care units, day-care centres and patient’s home. It is not merely about counselling or focusing on death and dying but indeed it is an active field of medicine that applies interventions that requiring knowledge and skills from the health care professional. Referring to Mr SO’s case, Hospice care would benefit him the most. As hospice care provides comfort to those from the time of diagnosis and throughout the course of illness. Although at this point of time Mr SO only in the middle stage of HD. His current mental and cognitive problem warrant care from someone other than his family. As the hospice care provides free of charge services which involved multidisciplinary setting will definitely help to improve his quality of life from now onward till the end of his life.