What Families Should Keep Handy During Serious Illness: A Caregiver Safety Checklist

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When someone you love is living with a serious illness, recovering after a hospitalization, or experiencing changing care needs, even an ordinary day can bring new questions. A symptom may change unexpectedly. A medication may be added. Another family member may need to step in and help. During these moments, having essential information organized and within reach can make it easier to communicate with healthcare providers, avoid confusion, and make informed decisions.

This preparation can be helpful across every stage of care. For someone receiving home health, it can support a safer recovery and greater independence at home. For someone receiving palliative care, it can help the care team manage symptoms and align treatment with the patient’s goals. For someone receiving hospice care, it can help families respond to changes with clear guidance and a focus on comfort.

Families are not expected to navigate changing care needs alone. Solaris provides support across three service lines, allowing care to reflect where the patient is in their health journey:

– Hospice care can provide comfort-focused clinical, emotional, social, and spiritual support for eligible patients and their families when the focus has shifted away from curative treatment.

– Palliative care can help people living with serious illness manage symptoms, communicate their goals, and improve quality of life alongside other appropriate medical care.

– Home health can help eligible patients recover, manage a health condition, rebuild strength, and remain safer and more independent at home.

If your family is unsure which type of care may be appropriate, Solaris can help explain the differences, answer questions, and guide you toward the support that best matches your loved one’s current needs and goals

Use the following checklist to create a folder, binder, or secure digital record for your loved one’s care..

Create a complete list of everything your loved one takes, including:

• Prescription medications
• Over-the-counter medications
• Vitamins and supplements
• As-needed medications
• Comfort medications

For each item, record the medication name, dosage, schedule, reason it is taken, and prescribing provider. Note any recent changes, such as a new medication or adjusted dosage.

Medication details are important in every care setting. A home health nurse may use the list to identify possible medication concerns after a hospitalization. A palliative care team may review it while addressing symptoms or side effects. A hospice team may use it to help families understand comfort medications and how they should be administered.

Keep copies of the list in your caregiver folder and bring one to appointments, hospital visits, and care-team check-ins. Update it whenever a medication is started, stopped, or changed. Never adjust or discontinue a medication without speaking with the appropriate healthcare provider.

Keep a written list of all known allergies, including allergies to:

• Medications
• Foods
• Adhesives or latex
• Environmental substances

When possible, describe the reaction. For example, note whether an allergy caused a rash, swelling, difficulty breathing, nausea, or another response. This information should be clearly labeled and easy to locate, particularly when multiple clinicians or family members are involved in care.

Write down your loved one’s current diagnoses and other important health information. This may include:

• Chronic or serious health conditions
• Previous surgeries
• Recent hospitalizations
• History of falls
• Swallowing difficulties
• Memory or cognitive changes
• Implanted devices
• Other conditions that may affect treatment

You do not need to recreate a complete medical record. A concise summary can help a new provider, emergency responder, or family caregiver quickly understand the situation. This summary can also make transitions between the hospital, physician’s office, rehabilitation setting, and home feel more coordinated.

Keep the names, roles, and phone numbers of the people involved in your loved one’s care. This may include:

• Primary care physician
• Medical specialists
• Solaris hospice, palliative, or home health team
  • Nurse or case manager
  • Social worker
  • Chaplain or spiritual care provider
  • Medical-equipment provider

Clearly identify which number should be used during regular office hours and which number to call after hours, on weekends, or during holidays.

Families receiving Solaris services should also understand the role of each team:

• Home health supports eligible patients who need skilled care at home, which may include nursing, therapy, medication education, wound care, or help recovering after an illness, injury, or hospitalization.
• Palliative care provides an added layer of support for people living with serious illness. It can help manage symptoms, clarify goals, and improve quality of life while patients continue other appropriate treatments.
• Hospice care supports patients and families when the focus of care has shifted toward comfort and quality of life. Hospice may include nursing, social work, spiritual care, personal care, medication and equipment support related to the terminal diagnosis, and bereavement services.

If you are unsure whom to call, Solaris can help you understand which team is involved and where to direct your question.

Create a separate list of family members, friends, neighbors, or other trusted individuals who should be contacted if help is needed.

Include each person’s:

• Full name
• Relationship to the patient
• Primary and alternate phone numbers
• Role in an emergency
• Availability or proximity to the home

It can also be helpful to identify who is authorized to receive medical information or participate in care decisions. Make sure everyone understands what is expected of them. A clear plan can prevent uncertainty and help family caregivers work together.

Advance directives document a person’s healthcare wishes if they become unable to communicate or make decisions. These documents may include:

• A living will
• A healthcare power of attorney
• Medical orders related to life-sustaining treatment
• Do-not-resuscitate documentation, when applicable
• Organ or tissue donation preferences
• Funeral home information, when appropriate

Keep copies where they can be found quickly. Make sure the designated healthcare decision-maker and appropriate members of the care team also have copies.

Along with formal documents, consider recording your loved one’s personal priorities. What helps them feel safe? What brings comfort? Who do they want involved in important conversations? What matters most if their condition changes?

These conversations are especially valuable during serious illness. A Solaris palliative or hospice team can help patients and families discuss goals, preferences, and what quality of life means to them. The goal is not to make decisions for the patient, but to help ensure that care continues to reflect the patient’s voice.

Record the name, address, and phone number of your loved one’s preferred hospital and pharmacy.

Include:

• Preferred hospital or health system
• Primary pharmacy
• Pharmacy hours
• Prescription delivery information
• Backup or after-hours pharmacy
• Insurance and prescription-plan details

Ask the care team whether there are circumstances in which a different facility or process should be used. This can vary by service line. A home health patient may need instructions for contacting a physician or seeking urgent evaluation. A palliative care patient may have a plan for managing certain symptoms at home. A hospice patient or caregiver should generally contact the hospice team when symptoms change or a crisis arises so the team can provide guidance based on the established plan of care.

If your loved one uses oxygen or other medical equipment, keep a current list that includes:

• Type of equipment
• Provider or supplier
• Supplier’s regular and after-hours phone numbers
• Prescribed settings or instructions
• Delivery schedule
• Backup power or outage plan
• Location of extra supplies
• Troubleshooting instructions provided by the care team

Equipment may include oxygen concentrators or tanks, hospital beds, walkers, wheelchairs, lifts, nebulizers, feeding supplies, wound-care supplies, or other devices used at home.

Solaris may help coordinate or provide education about equipment related to a patient’s plan of care. The specific support available will depend on whether the patient is receiving home health, palliative care, or hospice services and on the patient’s individual needs and coverage.

Do not change oxygen settings or alter medical equipment unless a qualified healthcare provider has instructed you to do so.

Caregivers often notice small changes before anyone else. Keeping simple notes can help the Solaris care team understand what is happening over time.

Record changes involving:

• Pain
• Breathing
• Energy or alertness
• Appetite or fluid intake
• Nausea or vomiting
• Bowel or bladder habits
• Sleep
• Confusion, restlessness, or anxiety
• Skin condition or wounds
• Swelling
• Mobility, balance, or falls
• Medication side effects

Note when the change began, how often it happens, what makes it better or worse, and what was happening at the time. These observations can help a home health team evaluate recovery and safety, help a palliative care team address symptoms and quality-of-life concerns, or help a hospice team adjust the comfort-focused plan of care. A notebook, calendar, or secure phone note can work well. The goal is not to document every detail. Focus on changes that are new, worsening, or concerning.

Families do not have to wait until the next scheduled visit to ask for help. Contact the care team when you notice a new symptom, a meaningful change, or something you are unsure how to manage.

Reasons to call may include:

• New or worsening pain
• Increased shortness of breath
• New confusion, agitation, or unusual sleepiness
• A fall or sudden change in mobility
• Difficulty swallowing medications, food, or liquids
• Persistent nausea, vomiting, diarrhea, or constipation
• Significant changes in appetite or hydration
• New swelling, skin changes, or wounds
• Medication side effects or missed doses
• Problems with oxygen or medical equipment
• A caregiver who feels overwhelmed or unable to safely continue the current routine

Ask the Solaris team in advance which symptoms should be reported immediately, whom to call after hours, and what steps to take while waiting for guidance.

For home health and palliative care patients, call 911 for an immediate, life-threatening emergency. Hospice patients and families should follow the individualized instructions provided by their hospice team, including whom to call during a change or crisis. When in doubt, use the emergency and after-hours guidance established in the patient’s plan of care.

Choose a system that is easy for your family to maintain. A clearly labeled binder may include:

1. A one-page health summary
2. Medication and allergy lists
3. Care-team and emergency contacts
4. Advance directives
5. Hospital, pharmacy, and insurance information
6. Medical-equipment details
7. Symptom notes
8. Questions for the next visit

Place the most frequently needed information at the front. Tell trusted caregivers where the binder is stored, and review it after appointments, medication changes, hospitalizations, or changes in condition. If you prefer a digital system, protect sensitive information with a secure password and make sure an appropriate backup caregiver knows how to access it.

No checklist can remove every uncertainty that comes with serious illness. But organizing important information can help families feel more confident, communicate more clearly, and spend less time searching for answers during difficult moments.

You do not have to wait for a crisis to begin these conversations. Ask what information should be kept nearby, which changes should be reported, and who to call when questions arise. Whether your loved one needs help recovering at home, an added layer of support during serious illness, or comfort-focused care, Solaris is here to help families move forward with greater clarity, dignity, and confidence.

Contact Solaris to learn more about home health, palliative care, and hospice services available in your area. Visit solarisfamily.com or call 888-376-5274.

This article is intended for general educational purposes and does not replace individualized medical advice. Services, eligibility, and coverage vary by patient and location. Follow the instructions provided by your loved one’s physician or care team.