Welcome back everyone. Now, let's take a look at the practical challenges people living with serious illness face on a daily basis. To the healthcare team, the challenges that pop immediately into mind are those about healthcare decisions, symptoms experienced, and treatment requirements. However, listen to any seriously ill person or their family caregiver tell you about their day, and it adds a whole new appreciation for the burdens faced. Regularly, people must choose between doing things they would really like to do and doing things they need to do for their disease. Attending healthcare appointments can be a full time job leaving little time off for daily activities. Often patients are too tired to drive themselves and must coordinate a ride. Arranging for healthcare equipment means they must be at home to answer the door, or sitting on the phone waiting for assistance with these devices. Trips to the grocery store or even bathing and dressing can leave people exhausted for the rest of the day. The sense of any fun to these days has flown out the window as all the details of the plan of care must be followed exactly. Figuring out day-to-day functioning, and caregiving needs, can be a comfortable place in which to start a whole person assessment. The topics included here are not that difficult, and this allows the palliative care team an opening to establish a good relationship and friendly partnership in meeting the patient and the family caregiver needs. If you're visiting the patient and the family caregiver in the home, take a quick glance about, it will give you a great snapshot of some of the challenges the patient is up against. Noticing the condition of the Yard as you approach, the ease of entry into the home, the state of the rooms inside will go a long way in gathering the beginning assessment of needs. Are there pets that greet you at the door? What are their needs? Who takes care of these animals? Is there a family caregiver present? Does the caregiver join in the conversation? What is their thought on these situations? So starting with questions such as, if you find that you need help, whom can you count on to come to your aid? Or, how often do you find you need someone to help? These types of questions will open up doors to beginning this assessment. Follow-up questions having to do with dressing, bathing, moving around, as well as help with grocery shopping, and cooking, complete the picture. A key clinical tool that's helpful for an in-depth look in this area is called the Katz Index of Independence in Activities of Daily Living. Long title but they commonly call it the Katz ADL. This tool is best to use when assessing functional status or in other words, how does a person perform activities of daily living. Clinicians typically use this tool to detect problems and performing activities of daily living, and to plan their care accordingly. The index ranks the ability to perform in bathing, dressing, toileting, transferring, continence, and feeding. People have scored yes or no for independence, in each of these six functions. A score of six, indicates a full function, four indicates a moderate impairment, and two or less indicates severe functional impairment. Let me give you a moment to look at that tool. This part of the assessment is also a good time to look at the needs and coping skills of the family caregivers. It's estimated that as many as 90 percent of the in-home long term care needed by adults is performed by their unpaid family caregivers. This translates into an estimated 65.7 million individuals who are providing care to their loved ones. The caregiver assessment looks at issues such as the health of the caregiver, what the caregiver understands about how to care for their loved one, and also how to perform this care. It looks at what caregiver resources are available, as well as the caregiver's thoughts about the patient's overall condition. The caregivers strain assessment tool shown here on my left is a good tool for this part of the assessment. It's made up of 13 questions that measure strain related to providing the care. Let's move on to the physical domain of the whole person assessment. Distressing physical symptoms experienced in the seriously ill population exert a large negative influence on patient's abilities to enjoy their days and overall well-being. Let's review what we know from the research. There was a landmark study published in 1995 that set the health care world on its head. This study was called the Support study, wait for it, it's long title it stands for, study to understand prognosis and preferences for outcomes and risk of treatments. Big long title, but what this study found was that nearly half of all seriously ill people reported that they had one or more moderately severe symptoms that occurred at least half of the time. Now prior to this study, there was very little understanding of the suffering at the end of life. So this study really pointed out that people are suffering, and we need to really pay attention and do something about it. In 2015, a study was published by Dr Kamal, his colleagues at Duke University. This research team looked at the heavy load seriously ill people carried caused by their symptoms of their disease, and their ability to function. This team of researchers found that 30 percent of seriously ill patients suffering with non cancer disease reported one or more moderately severe symptoms such as high levels of fatigue, that's where they're extremely tired. They had anorexia, that's where they lose their appetite, and dyspnea, which is a shortness of breath. There were more reports of pain, depression, and constipation in those people who had a lot of trouble functioning, and what this study warns us is to be careful to look for symptoms even though the person might be up and walking about, and doing things during their day. People don't have to be in bed to be suffering from symptoms. Fatigue or extreme tiredness in patients with end stage renal disease undergoing hemodialysis is estimated to be in the range of 60 to 97 percent. The level of fatigue in patients undergoing hemodialysis is one of the highest among patients living with chronic illness. In addition to fatigue, there was a systematic review of multiple studies that was looked at by Dr Murtagh and her colleagues. This research team found that 55 percent, half, said they had pruritis, which is severe itching, 53 percent had constipation which is difficulty having a bowel movement, 49 percent or almost half weren't interested in eating, 47 percent had pain, 44 percent couldn't sleep, and a third were anxious or were depressed. So, as someone going in to help, where do we start when the patient tells us all about multiple symptoms? Well, that's a great question, glad you asked. So starting with the most upsetting symptom first will give you a place to start. To find out which symptom is most uncontrolled, use questions such as of the symptoms that are bothering you, what are the most bothersome? Or, tell me how these symptoms affect you during the day or the night? Do they affect you during work or when you're resting? Do they make you worry about your health? Do these symptoms affect your family and friends? How? To assess how symptoms are managed, use a simple scales such as a zero to 10 rating scale. This will help you get an understanding of how much a symptom is a problem. The zero to 10 rating scale is one where zero means no symptom is present, and 10 meaning the most horrible level of the symptom is present. How people function also plays a very important role in how people are able to enjoy their days. Function can also give clues as to how the disease is progressing, and even maybe how long the person has left to live. The typical path patients with cancer diagnosis walk, is a fairly steady functional status that quickly lowers as the end of life nears. Non-cancer diseases on the other hand experience a slower decline in function. If this decline goes unnoticed, the window in which to help function improve will disappear losing valuable interactions and time with family. In heart failure for example, the functional status usually looks something like this slide. Notice how the curve moves up and down. The down line shows a time when the illness is progressing and causing problems. The up line shows a time when the disease has quieted down and the person is feeling better. Along the way, there's always the risk of sudden death as shown by the dotted downward pointing lines. But without sudden death, the illness progressively robs the quality of the person to function. Here is the line that shows how frailty and dementia progresses. It's a long slow slide down with no sudden ups or downs. Join me for the next video where I'll walk you through the psychological, social, economic, and spiritual domains of the whole person assessment.
