To Do List Handout
Background: The patient is under the care of medical specialists—round-the-clock. One is dedicated to stay with the patient at all times. However, there are still things that the immediate family can or must do that are important to the well-being of the patient and the family group. The number and nature of items on this immediate To Do list may surprise you.
1. Quiet Room: Ask your hospital administration contact if there is a Quiet Room that can be dedicated to the use of your family for a few days. Both quiet and privacy are intense needs at this time.
2. Shock: Deal with shock in yourself and others. This is a medical necessity. If not dealt with you can’t help the patient.
3. 36 hour events: Ask for an explanation of what to expect during the next hours and days, including the patient’s condition and what to watch for, what medical support will be provided and any interventions that might be necessary.
Bedside support: This is as much about benefiting the family caregivers as it is about the wellbeing of the patient who is intensively monitored by equipment and nursing staff.
• Select family members for the bedside according to two prime criteria: if they need to be there; if they can be a constructive presence.
• Schedule family members to take turns at the bed-side. Start with an hourly rotation. This will vary greatly with situational specifics such as individual stress levels and ability to rest when out of the Intensive Care Unit (ICU). As a rule of thumb, if someone is able to sleep it is best to let them sleep and replace them with someone else at the bedside. That concession will benefit everyone. It is OK for family members to take breaks as necessary and to leave the patient with the professionals.
• Find out the procedures to gain access to the locked ICU.
• Find out hospital ICU rules concerning the minimum age of visitors, number of visitors allowed simultaneously at the bed side—probably two—and visiting hours. The rules for critical care patients and ICU are not the same as for the wards and the hospital as a whole.
5. Immediately begin to use blood harmony to help your injured loved one. See pages 87 and 103! Bookmark not defined. Error: Reference source not found
6. Primary patient advocate(s): Determine within the family who is/are to be the primary patient advocate(s). Inform the ICU staff and provide basic information: name, relationship to patient, phone numbers. Discuss with the ICU staff or social worker your family support plan and tweak it according to the feedback they provide. Inform your team of the changes.
7. Dependents: Arrange to inform and care for dependents including pets.
8. Hospital Access: Find out the hours when the external hospital doors are locked and the process required in order to enter the hospital at such times. Inform your team of these.
9. Logistics: Find and give to core team the location of washrooms, nearest building entrance and elevators, cafeteria, coffee shop, and lounges on the ICU floor.
10. Sanctuaries: Find and arrange for rest and meeting spaces—hospital provided such as the Quiet Room or local hotels.
11. Outside spokesperson: Identify, ask and brief someone to be your family’s contact with the outside world of friends and neighbours. If you can, arrange for a friend—one who is NOT in the core family group—to make the important phone calls to others. This will take a tremendous load off family members who can’t handle the task now.
12. Must inform group: Make a list to contact. Assign responsibility for calling or emailing.
13. Succinct Script: For your spokesperson or persons, prepare a succinct script containing, for example:
• A concise description–e.g. injured, critical, in ICU, in or not in coma, next few days (first 36 hours are critical)
• Provide cause of injury if you know it and can and feel like disclosing it (don’t spread extreme guesses).
• Tell them that there are to be no visitors in the short term, and no flowers nor gifts.
• Tell them if you will provide updates via a social networking site. Give them the address if you can or the name by which it will be known, e.g. “<<patient name>> Is In the Hospital”.
• Ask them to phone or to send email to <<contact address>> if they want to be notified of developments.
• “Now I must get on to other calls. Bye.”
There are short-term and long-term realities with which you must deal.
I’m using “Critical Care” to refer to the first 36 hours followed by the rest of the period for which the patient will have dedicated 24/7 support of a nurse.
1. Have someone at the patient’s bedside when the doctors’ rounds are done in order to hear the doctors and nurses discuss the update on the patient’s condition and changes to medication, treatment and tests. Prepare succinct observations, comments or questions about the medical treatment and give them to the professionals at that time.
2. Keep an eye on the health of the core members of the family caregiver-team.
3. Care for the needs and feelings of family and friends.
4. Use social networking tools such as Facebook to “push”
information out to the large group of family and friends. Discuss with core family your accepted rules for writing, vetting, frequency and posting procedures. Discuss the purpose of the site, who will access it, who will be able to contribute to it—including the broader community. Discuss in a specific and a general sense what will and what will NOT be posted to the site. Agree upon the method to create and approve each posted message. To avoid harmful conflict, it is important that key family members have an opportunity to discuss this communications tool, to see its purposes and benefits, and to be assured as to how required privacy and confidentiality (patient and family) can be protected.
5. Use the services of the hospital social workers and pastoral care staff.
6. Request an official letter from the hospital—To Whom It May Concern (see sample at following appendix).
7. Get to know the hospital routines and layout.
8. Suspend your idea of what is normal and consciously seek patience and ensure that others understand this too.
9. Designate the family member who will be the primary contact for relatives, friends, neighbours, community (e.g. churches, schools, service clubs, hobby clubs, etc.) and employer or business contacts.
10. Provide the external support team with any special instructions to deal with children, pets, house, media (if required), etc.
11. Distribute this To Do list to others on the team.
1. Organize shifts and days off for all family members, including yourself.
2. Find out the schedule for nursing shift changes and doctors’ rounds. Get the phone number to call for updates once you are sleeping at home again. In our case, the shift changed at 7 AM and by 8 AM we could phone to get an update from the incoming day nurse.
3. Pack and carry a small bag with such essentials as an extra set of car keys, coins for vending machines, chargers for cell phones and portable electronics, Kleenex, personal medication, necessary official papers, reading material, toiletries and even a change of clothes. For security reasons, don’t leave it with the patient.
4. Updating social networking is less frequent but still necessary. If there are no postings in the early stages then people become anxious, rumours will spread and you will receive a lot of calls.
5. Learn about and use the services of the hospital social and pastoral care workers.
6. Find the time and energy to help others who might be your loved one’s partners, close friends, co-workers, or roommates.
7. Smile and say hello to other patients’ family memberswho—like you—are being there and doing that. It will make both you and them feel better. Everyone needs a smile and everyone needs empathetic, profoundly understanding friends at such times.
8. Find and take preliminary advice from a lawyer.
Download To Do lists.