Meeting the Palliative Care Team
If you are meeting with a palliative care physician, your loved one is probably experiencing a level of pain that requires a high dosage of multiple medications that your primary care physician, oncologist or other specialist is not comfortable prescribing.
Palliative care physicians are pain management specialists trained to treat pain that is chronic due to disease or the curative treatments, chemotherapy and/or radiation, for that disease – most often cancer.
The palliative care team’s goal is to make your loved one as comfortable as possible, improving the quality of life for everyone in your family. Communication is critically important to achieving this goal: you with your loved one and the team with both of you. There are no unimportant questions and you should always receive an answer or action to any question or request.
Have a notebook specifically for office visits where you can write down your notes, instructions and suggestions. Also include a copy of each medication and safety chart that you give to the physician. The notebook will serve as an immediate reference if questions arise regarding past visits.
Your First Visit
After arriving for your first visit to a palliative care physician, a nurse will provide your spouse or loved one with forms that will ask for personal and medical information related to their diagnosis, along with a ream of other papers covering:
- Explanations of what palliative care is and the components included in that care.
- Statements on state law regarding advanced directives and DNR orders.
- HIPAA disclosure.
- Patient consent for consulting services and treatment.
- Assignment of insurance benefits.
- Notification form that acknowledges receipt and understanding of patient’s bill of rights and responsibilities, release of medical records and related information.
- Prescription policy.
- Clinic and home visit policy.
- Prescription refill information.
Several nonprofits offer general medical history, prescription, home safety guidelines, forms, checklists, and tools. These resources are downloadable and can be used as templates for charting your specific needs. See the Next Step in Care, NTOCC, and the Caregivers Library.
Another excellent resource is: The Caregiver’s Toolbox: Checklists, Forms, Resources, Mobile Apps and Straight Talk to Help You Provide Compassionate Care. Carolyn P. Hartley, MLA, and Peter Wong. Taylor Trade Publishing, 2015
Your loved one will be asked to provide their medical history so make certain that you have the following information available:
- Patient’s ID: insurance card, Medicare/Medicaid card & supplemental insurance information, driver’s license or other photo identification. The staff will make copies to have on file and for verifying insurance coverage.
- List of patient’s allergies/sensitivities to medications, foods, materials and other substances.
- List of all physicians currently involved with your loved ones care.
- List of surgeries, treatments (chemotherapy, radiation), their dates and locations.
- List of current medications (prescription, over the counter, herbal). The information should include:
- The name of the medication
- When medication is taken – AM/PM – and frequency
- With or without food
- Last dose and time given
- Refill information
- Number of pills prescribed
- Number of refills
- Date of next refill
- Pharmacy information: name, location, phone number
Alert the care team about any side effects or difficulties in taking current medications.
There are, also, a few things that you should request from your physician.
- A guide or manual of basic home palliative care and first aid. You may have received some information if your loved one recently transitioned from the hospital to your home. But it never hurts to ask if your palliative care team has information about basic home care and first aid.
- A list of resources that might be needed, such as specialty pharmacies or home health care services.
- Other outside sources that will help you secure support services, such as meals delivered and home help services (cleaning, landscaping, snow removal, laundry services) that might be available in your area.
After Each Visit
After every appointment, take time to discuss the visit with your loved one. Compare notes: What did they hear? What did you hear? If there are discrepancies, call or email the office for clarification as soon as possible. Write down any questions or concerns that arise in the immediate discussion with your loved one or in the following days, so that you can share them at the next appointment. Don’t rely on your memory – write it down in your notebook.