Assessment tools help family understand the process of dying. While many people are quite different, there is a natural progression that the body goes through as the systems begin a slow shutdown. It is important that a family and/or caregivers create a care plan, give informed treatments (physical, social, emotional, biological), understand treatment outcomes, assess responses to treatment.
With rotating caregivers, it is important to know if a patient has bedsores, or parts of the body that require extra attention. It is important to understand individual issues and to treat each patient as a person, as an individual, and not as a patient. For this reason some of these assessment tools act as treatment tools.
Each family should create a duotang with contact numbers, guest or visitor list, whether meals were given, beds changed, a list of favourite foods, tea or coffee preferences, and current food intake. Some caregivers are unable to administer Rx, including cremes, or Tylenol. This must be understood. I used a simple silver wedding guest book for my dad!
One very clear guide available to non-medical persons is the Victoria Hospice Society Palliative Performance Scale (PPS) this gives a percentage and helps the family and caregivers better understand the progress of the disease and its effects on their body. In this way, a family can better prepare the family.
The Edmonton Symptom Assessment System (ESAS) clearly identifies issues for the care recipient: pain, fatigue, nausea, depression, anxiety, drowsiness, appetite, well-being, shortness of breath (apnea), bowel function.
Red Cross PSWs are trained to record such functions as voiding and bowel movements, but a client's state of mind is important, too, e.g., agitation or anxiety (for which physicians often Rx Lorazepam, for example). With this kind of information families and caregivers can better understand a care recipient's fears and assuage them.
Patients may hallucinate, and this, too, is 'normal'. They may talk to people who are not, apparently, there. There is no point,as with Alzheimer's or dementia patients, to argue with them. Simply do what you can to remove the concern: offer to get rid of (imaginary) fears, and play out the activity by physically removing such. My father had conversations with his dog, who was with another family.
Edmonton Symptom Assessment System (ESAS)
An easily used symptom assessment tool, validated in studies and extensively used in research and day-to-day clinical care of the terminally ill in all settings. There are two pages to it. (Click on the images to download the PDF file.) Further description at the site. What is great is being able to locate bed sores, or joints that are sore, or the location of painful sites.
A simple, online 0 - 100 % scale. But a bit too succinct, for me!
Victoria Hospice Society Palliative Performance Scale (PPS)- Version 2
For quick assessment of functional status in the terminally ill.
MVQOLI - Quality of Life Index
Lorazepam - Wikipedia: initially marketed under the brand names Ativan and Temesta, is a benzodiazepine drug with short to medium duration of action.It is a powerful anxiolytic and since its introduction in 1977, lorazepam's principal use has been in treating the symptom of anxiety.