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App proposal fhpc
- 1. FAMILY HOSPICE EDUCATIONAL NETWORK FOR PATIENTS AND FAMILIES Not Knowing What To Do Patient Care Crises Lack of Understanding Fear, Anxiety Distant Relatives
- 2. FAMILY HOSPICE EDUCATIONAL NETWORK FOR PATIENTS AND FAMILIES Individualized Educational Programs Basic Information about illnesses and Hospice Deeper Exploration of Topics Important to Hospice Patients Medications
- 3. FAMILY HOSPICE EDUCATIONAL NETWORK FOR PATIENTS AND FAMILIES How to deliver what they need. The Information Dump What Is Most Important to You Right Now
- 4. TOPIC COLLECTIONS The Hospice Benefit Family Hospice – About Us Services We Provide
- 5. HOW?
- 6. FAMILY HOSPICE YOUTUBE/VIMEO CHANNEL
- 10. TOPIC COLLECTIONS Stages of Dementia Agitation and Anxiety Trouble Swallowing
- 11. TOPIC COLLECTIONS Care-Giving How To Videos Taking Care of Yourself
- 12. TOPIC COLLECTIONS Hospice Medications Why we stop some medications Opioids Anxiety and agitation
- 13. PRINTABLE MATERIALS Contact information What to do in an emergency
- 14. GOALS Individualized Educational Programs Deeper Dives Support and instant access to information
Editor's Notes
- At family hospice, we have undertaken several quality improvement projects based on principles of lean production or the Toyota production system. One of the projects we have undertaken revolves around crises inpatient care. one of the most frightening aspects of taking care of patients at the end of life, is not knowing what to do to ease the patient’s suffering. One of the most distressing things for the caregiving team is to recognize the lack of understanding by patients and family members of what is going on around them, what they need to do, and preparing them for all of this, and not having the resources to do it. It is also terribly distressing for family members who are out of town, who want to participate in supporting the patient and family, but again, do not have the resources to know what to do and how to help.
- As patients are admitted to hospice, the admitting staff perform their assessments, and it quickly becomes clear where families need help. They may need help understanding prognosis, the hospice program, the services we offer, how to give a bath, how to administer medication, and even how to ask for help. They may be experiencing existential crises, and they may need deeper exploration of topics such as loss and grief, or even the terminal illness. They may be afraid of giving medications like morphine or sedatives. They are thrown into the deep end of the pool, and we are trying to throw them a rescue line.
- To prevent crises from spiraling out of control, we need to deliver to patients and families the information they need, when they need it, and how they need it. A classic medical model of preparing families for these crises is the information dump. We hand them booklets and pamphlets and flyers and lecture them on pain and morphine and agitation and end-of-life symptoms and on and on. They hear almost none of it, or they hear certain things that they fixate on, and cannot move past them. We know our patients and families have individual needs, and we can assess those needs with every interaction, and try to meet them where they live, rather than trying to make them learn the entirety of the hospice culture in a few hours. Our most important duty is to find out what is most important to the patient and the family right now, and do our best to help them with it.
- Let’s just take something common to all her patients: understanding the hospice benefit, telling them about our hospice and the services we provide. We can give them a pamphlet, 30-40-50 pages with all of this information. We can give them flyers and a DVD. And we can pretty much guarantee that they might look at some of this for a few minutes and then set it aside. Admission to hospice is a stressful time, and how much can we really expect.
- On the other hand, after a thorough assessment, I have a pretty good idea of what they’re clear about and what they’re not clear about. They don’t understand how dementia can be a terminal diagnosis. They don’t understand why hospice staff can’t be there around the clock. They don’t understand why the patient can’t swallow any longer. They had an uncle died after just one dose of morphine. These, and many other topics, are very common, and very important. Critically important to helping our patients through these very difficult times. There critically important to keeping our patients comfortable, and making families confident in their ability to care for their loved one.
- I think we’re past the time where handing someone booklets and pamphlets is adequate. Health literacy is a serious problem, as is literacy in general in some areas. I think we need to develop a curriculum, for all of our patients, but even more importantly we need an IEP, and individualized educational program for our patients and family members. We need to not only marshal the resources available on the Internet, on YouTube, on Vimeo, but we need to create content that is specific for the needs of our patients and families. Imagine handling the patient or family a tablet, and then clicking the boxes to create an IEP, specifically teaching that patient or family what they need to know right now. Imagine them, after the hustle and bustle of the admission process, or the case manager visit or the social worker visit, being able to sit down from it, and watch a video on morphine or methadone or giving a bath, or administering a medication, or about what it means when the patient gets confused or short of breath or their pain increases. We can prepare our patients and families on what to expect, and how to handle it.
- For those patients who are accustomed to tablets and the Internet, this is not a hard sell. For patients who are not accustomed, we will have to make this as user-friendly and intuitive as possible. Imagine each icon representing an educational video that we have preselected for them, and they can just click on each one. I would envision it as homework. When the admission nurse leaves, she leaves them an assignment: please watch the video on administering medications or IV fluids etc. When the case manager comes by the next day, she can answer questions about the videos, and suggest more material. She can print out paper material, Acrobat files, if they preferred that. But it all becomes custom, it all becomes pertinent to the patient’s care right then right there. It doesn’t take the place of the one-on-one interaction that makes hospice hospice, but it gives patients and families the ability to learn about their illness and situation, and discover how to have the best quality of life for as long as they possibly can.
- What would we want to make available to them? As I noted in a prior slide, the basic common things to hospice, such as how the benefit works, what happens if a revoke, what services are available, how does the inpatient unit work, how does respite work, and what happens if there is a crisis. But so much of what we do as hospice providers is give information that either has not been given previously, or simply not been absorbed previously due to a variety of reasons that you already know. They need to understand their illnesses, which even if they’ve lived with him for a long time, they may not completely understand how they have arrived at this point. Caregivers need to understand what caregiving entails. They need to understand the medications are being asked to give. They need to understand the medications are being told to get rid of. They may need general information, but some more specific information.
- Dementia and delirium or two of the more frightening and confusing illnesses to deal with. They need information, they need support, they need understanding and they need to know they’re doing the right thing. Patients with cancer, congestive heart failure, and COPD still often don’t understand their illnesses. They don’t understand how the symptoms relate to their illness. They don’t understand why we prescribed what we prescribed.
- As their illnesses progress, the progression is fairly predictable to us, but a complete mystery to them. Why she choking, why can’t he swallow anymore, why is he striking out at me?
- And caregiving is a whole realm unto itself. We have caregiving videos, packed into a dense DVD. I don’t need to watch a one-hour video explaining all of caregiving, I may just need to know what to do with a urinal. And I also may need to get some help taking care of myself.
- Questions about medications are some of the most common reasons we visit patients and families as physicians. Frankly, we generally have the same basic patter for explanations of why we do what we do. But we only get to do this to select patients, for the most part. We can’t visit every hospice patient. But we can give them the basics, we can give them our basic explanations. Nurses can then answer questions, and we can answer questions, but we can do more good for more people if we make this information accessible to them where and when they need it.
- As I mentioned, I would envision printable PDF files with basic contact information, and instructions on what to do in an emergency. Maybe printable materials on some of the individual caregiving components, such as how to change bed sheets.
- The goals of all of this go back to our original problem. Patients enter hospice in the most difficult times of their lives. Some of them are already in crisis, and some of them are hours or days away from crisis. They need the best support we can give them, and that support is most often knowledge. We can develop individualized educational programs to get them the information they need when and where they need it. They need to be confident in the care they’re giving. Some of them want to know more, they want to know more about their illness, they want to know more about the medications are being given. We should help them do that. And we should also support those who aren’t in the home or facility. We should make information available on the Internet in much the same way we could on tablet computers. I think it is clear that these are things that are technologically not just feasible, but easy. It takes a significant investment in people and resources to make it happen, but I think the good we will do for our patients and families is immeasurable. The prevention of pain or shortness of breath in a dying patient is priceless. The prevention of guilt and distress among caregivers is priceless. The confidence to take care of a dying patient is priceless.