A first palliative care visit covers more ground than most families expect, and the ones that go well are usually the ones where someone spent twenty minutes preparing.
None of this preparation is complicated. It is mostly about arriving with the real picture rather than a tidied version of it.
Bring the current medical picture
Have the medication list, the major diagnoses, recent hospital or specialist notes if you have them, and the names of the clinicians involved.
Write down recent changes in pain, breathing, nausea, appetite, sleep, anxiety, energy or confusion. Changes over the last few weeks are more useful than a general description of how things have been.
Describe the difficult parts of the day
Symptoms make much more sense in context, and context is what turns a symptom score into something actionable.
Does breathlessness make showering impossible? Does pain prevent sleep, and at what point in the night? Is nausea making eating impossible, or only unappealing? Is the caregiver waking three times a night?
These details let the team focus on quality of life rather than on a number between one and ten.
Talk about goals in ordinary language
No formal statement is needed, and the plainer the better.
A goal can be wanting enough energy to sit outside with grandchildren. It can be wanting to stay out of the emergency room if symptoms can be safely managed at home. It can be wanting a daughter to know who to call when things change.
Goals in that form are far easier to build a plan around than abstractions about comfort.
Bring the caregiver’s questions too
Palliative care supports the patient and, in practice, much of the family around them. Caregivers should come with their own list.
- What warning signs should prompt a call?
- Who do we contact after hours, and how?
- What should we do if a medication does not seem to be working?
- What equipment might help, and how do we get it?
- How do we approach advance care planning?
- What changes would mean a different level of care is needed?
Palliative care can exist alongside other treatment
The National Institute on Aging explains that palliative care can be provided alongside treatment for a serious illness.
It is not automatically the same thing as hospice, and asking for symptom support does not mean anyone is giving up. That misunderstanding is the most common reason families decline a referral they would have benefited from.
Expect the plan to evolve
Serious illness changes, sometimes quickly. The most useful palliative relationship is one that makes it straightforward to revisit symptoms and goals as things shift, rather than one that waits for the next crisis to force a conversation.
Homestead Health provides in-home palliative care in the Phoenix metro area. Call the team to talk through the situation and whether a home visit may be appropriate.
Medical note: Palliative care, hospice eligibility and treatment decisions are individual and should be discussed with the patient’s healthcare team and payer as applicable.
Sources used for fact-checking
- https://homesteadhealth.org/our-work/palliative-care/
- https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care