How do I adjust to this unfamiliar place called a hospital?
How do I find out about the visitor policy?
- Check the hospital website or ask at the front desk or security – many hospitals limit the number of families that can be in an intensive care unit at one time and will require family members to “switch out” so that there is no overcrowding in the patient’s room. This is to help with the care of your loved one. Additionally, they may limit families from coming up during shift change to limit confusion in the unit. An exception can be made if there is a scheduled family meeting to discuss treatments, progress, or prognosis.
- Hospitals may still have limited hours post-COVID, for example, 8 AM – 8 PM. In certain states, if the patient requests a support person 24/7, they can have that support – check with your hospital or state’s website.
- Policies around staying overnight in the room vary across hospitals, and you should ask the front desk or your nurse to get clarity and plan the next steps. Of note, patients who are under 18 years old are allowed a family member to accompany them 24/7.
What about COVID?
- COVID-19 policy regarding masking and visitation will be posted for each hospital at the door and varies. It also changes a lot based on current COVID levels in the region.
What do I do if I need assistance in a language other than the native language spoken where I am?
Legally, as a patient and a family member, you have the right to an interpreter, and no one should be using family members or friends that are bilingual to interpret, specifically in situations of complex conversations and when getting consent for care. The methods may vary:
- Phones are the most commonly used option
- Virtual platforms
- In-person interpreters
Where are the different options for hospital parking?
- Normally, there are options for both self-park and valet parking. Valet parking is typically available 24 hrs a day at the main entrance of the hospital.
- For extended family stays, parking offices will often offer discounts for visiting families. These are in addition to the “patient” discounted daily parking.
- In a large city or urban area, look for discounted parking applications such as SpotHero via your smartphone.
What if I don’t live close to the hospital?
- Nearby hotel accommodations – larger systems and destination hospitals (for example Mayo Clinic, or the Cleveland Hospital system) will have deals set up with close-by hotels where you can get a cheaper rate. Normally, if you call the hotel and let them know that you are traveling for medical reasons, they will provide a discount.
- In case the patient is a child, most children’s hospitals will have either a Ronald McDonald House or a similar housing option nearby for families. If you live over 50 miles away, you can stay there for free or on a donation basis. Everyone staying in the house usually must help with a job (washing dishes, etc.) to offset costs, but it’s never a big job, and if your child is very sick, they don’t hold you to it.
Where do visitors brush their teeth? Shower? Change?
- A lot of this depends on the hospital and resources they have created to support families, but most of them have limited to no designated spots for family members to brush their teeth, shower, or change clothes. It’s essential that you or someone in your family works on securing overnight accommodations as described above instead of relying on hospitals to provide those facilities.
Is there a specific area where I can make phone calls, charge my phones, and store my possessions?
- Most intensive care units will have a family waiting room which will have electrical outlets for charging phones and possibly lockers to store things. Please don’t forget to bring your phone chargers.
What and where do I eat?
- The front desk or nurse can assist in understanding what the cafeteria or other food options are in a hospital or within walking distance of the hospital. Please note the hospital cafeterias are open for limited hours.
- Every hospital has vending machines for food and beverages. Ask staff where these are located.
Where do I find logistical and emotional support?
- Your loved one’s nurse is the most important resource for any of your informational, logistical, and emotional support. Nurses today can also request additional services including mental health, counseling, and spirituality, which are nonmedical professions.
- Chaplain service could provide spiritual care. They are normally available in every hospital 24/7, and most hospitals will have a non-denominational chapel on site.
- Social workers are a great resource and tend to work between 8-5 pm. They can assist with the following:
- Organizing family leave paperwork following the Family and Medical Leave Act of 1993, a United States labor law requiring covered employers to provide employees with job-protected, unpaid leave for qualified medical and family reasons.
- Placement and transportation to rehabilitation facilities or nursing homes
- Setting up home care
- Obtaining assistive devices
- Setting up follow-up visits post-discharge
- The community health worker program is sweeping the nation to provide lay services to patients due to high volumes of need and limited social workers – almost a triage to get people connected to higher levels of services, social programs, and referrals in the local community.
How do I take care of my work obligations?
- For the patient – reach out to the Human Resources team at their workplace and let them know that their employee is currently unable to work due to a serious medical condition. Ask how you can fill out the needed paperwork for their needs. Be sure to also ask about both short- and long-term disability and its implications for salary.
- For you – reach out to your Human Resources team and request Family Medical Leave Act (FMLA) paperwork to request intermittent or full-time leave. FMLA will protect you from losing your job for 12 weeks. You may be able to extend your leave after 12 weeks, but your position may not be guaranteed. Please check with your Human Resources team and your immediate supervisor for these rules.
- Not every workplace is covered, and not all employees are eligible. For more details on FMLA and your workplace eligibility, please click the link: Family and Medical Leave Act | U.S. Department of Labor (dol.gov) and contact your Human Resources team.
How do I receive daily medical updates?
- Care team rounds (which should include the nurse, physician, clinical leader, and other trainees) should be done daily before noon on weekdays and weekends. You should be able to attend and listen to updates during these rounds. Afternoons can be when the family receives official meetings and potential additional updates.
- Occasionally, you could reach out to the nurse assigned to your loved one if you want to be included in the rounds. Every hospital and every intensive care unit culture is different, and your request may or may not be accepted.
- Nevertheless, request a family meeting if you are not able to be part of the daily rounds. This allows you to get updates from the medical team as well as discuss the daily care plan for your loved one.
- Sometimes particularly for tough medical decisions, you may feel unsure of what’s the right path forward. In those instances, you can ask questions such as, “If this were your spouse/child/parent, what would you do?”
What happens if I have to leave my loved one at the hospital, and then need further updates?
- You can leave your phone number on the “board” in the room.
- Provide your phone number to the nurse and doctors taking care of your loved one. They will make sure you are entered into the patient’s chart as a primary contact person.
- Be sure to provide care staff with the completed healthcare proxy paperwork.
Are there efficient ways to provide regular updates to my extended family?
- Websites such as CaringBridge and Whatsapp groups offer a way for everyone to receive updates and not burden someone with constant texts and phone calls.
- By keeping these platforms up to date – you can share updates in one shot and manage the expectations of the extended family members.
How do I access my medical chart?
- Many hospitals will allow access to the chart in real-time through electronic options. Other facilities will not publish this data until post-discharge.
- If you are looking for results or specific questions – reach out to your nurse or care team who can pull up results or give information about what is happening.
How do patients and families know if they are being discharged?
- In hospitals, discharge plans are started on the day of admission – which seems odd, but the treatment team’s goal is to get a patient to a safe and lower level of care based on acuity.
- Daily rounds have discussions related to discharge. Feel free to ask your nurse about these discussions.
- Some hospitals will have a calendar on the wall of the inpatient floors that will indicate when discharge is tentatively planned.
- Your loved one will be seen by a team of rehabilitation specialists including physical, occupational, and speech therapists, and possibly a physiatrist who specializes in determining therapy needs. These evaluations ultimately determine the next destination.
- Once discharge orders are in, have a plan for the following:
- How you will be getting home?
- Do you have all the needed supplies at home (are we now using a walker or other device? Do you have that at home? How can you obtain the needed things?)? Reach out to the physical and occupational therapy teams to order those supplies.
- Do you now need a home health aide at home? Check if that has been organized by your care manager or social worker.
- Do you need prescriptions for any new medications? What pharmacy were they sent to? These will be handled by the treating team of doctors or nurse practitioners. Ask about a meds-to-beds program (so you leave with 30 days of medication and do not need to go to a pharmacy).
What do I do if I do not feel heard or I have a problem?
- Normally, there is a separate office consisting of a team of patient care services representatives who are responsible for addressing family members’ grievances. You can schedule a time to meet with them and express your concerns.
- If you are having a specific issue with nursing care, start with the nursing manager of the unit that you are on, then go to the patient care director.
- For after-hours urgent needs – you may need to reach the Administrator on Call. Pick up any phone and dial “0,” then ask for the Administrator on Call.
- For issues with physicians – ask the nurse to speak to the attending (if you are concerned with a resident physician’s or other trainee’s care) or the Chief Medical Officer if you have an issue with an attending physician.
Thank you to our contributors
Christina Wagener & Jasmine Wylie
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