Planning for serious illness or incapacity is a defined process that can be done at any time.
Advance decisions
Refusing specified treatments in defined circumstances.
Which is legally binding in several jurisdictions.
Appointing a decision maker
Someone empowered to decide if you cannot.
Which requires formal documentation.
Conversations
Family and clinicians knowing your preferences.
Which matters as much as documents.
Review
Preferences changing over time.
Why it is worth doing before it is needed
Documenting preferences and appointing a decision maker requires capacity, which by definition is absent at the moment the arrangements become necessary.
Which means the planning has to happen while it feels unnecessary.
Families asked to make decisions without knowing what someone would have wanted describe it as the hardest part, and a conversation beforehand removes that burden entirely.
What documents do
Advance decisions binding in defined circumstances.
Which requires specific wording and formalities.
Appointing someone
Legal authority to decide on your behalf.
Which is a formal process with defined requirements.
Telling people
Documents nobody knows about achieving nothing.
A general note
Legal frameworks differ substantially by jurisdiction; take advice.
Why knowing how the system works matters
Most frustration with healthcare comes from processes that are entirely rational from the inside and completely opaque from the outside. Why reception asks what is wrong. Why one person waits longer than another. Why discharge takes a day after the doctor said you could go. Why a result outside the normal range is not necessarily anything.
None of those is arbitrary and none of them is explained at the point where the explanation would help. The people running these systems are solving clinical and logistical problems, and the patient experience of those solutions is a by-product nobody designed.
What patients can actually do
Give complete information when asked. Report deterioration rather than waiting. Ask what a recommendation is based on and what the alternatives are. Request a second opinion when the stakes justify it. Read your own records at least once. Use the service that matches the severity.
None of that requires medical knowledge, all of it improves outcomes, and most of it is never suggested to anyone.
The things nobody mentions
Second opinions are routine rather than confrontational. Records are accessible by right. Complaints procedures are free and independent at the escalation stage. Advocacy services exist to help people navigate all of it. Carers have entitlements they mostly do not claim.
Every one of those is published somewhere by the relevant health system, and almost nobody encounters the information until they need it and are least able to go looking.
A general note
Nothing here is medical advice, and health systems differ enormously between countries in structure, entitlement and process. Anything concerning your own care belongs with a qualified professional, and the authoritative source for how a system works is that system itself.
The pattern across all of this
Health systems are built around clinical priority and constrained capacity, and almost every process that frustrates patients follows from one of those two things.
Triage exists because some people need to be seen sooner than others. Waiting lists are ordered by urgency because treating chronologically would harm people. Discharge involves several organisations because care at home requires more than a medical decision. Tests are ordered selectively because testing indiscriminately produces false alarms.
Understanding that does not shorten a wait. It does remove the impression that the system is indifferent, which is the interpretation most people reach in the absence of any explanation.
Where the reliable information is
Health services publish patient information covering exactly this ground, and it is free, accurate and written for the public. Regulators publish standards and complaints data. Guideline bodies publish public versions of their recommendations.
All of it is available before anyone needs it, and almost nobody reads it until they do, at which point they are least equipped to go looking.
On dealing with staff
People working in health services are generally operating under pressure, within constraints they did not set, and they are dealing with a great deal of frustration that is properly directed at the system rather than at them.
That is not a reason to accept poor care, and complaints procedures exist precisely for when something has gone wrong. It is a reason to separate the two, which produces better outcomes in both directions.
One last point
Almost everything described here is checkable, published and free, and the moment when someone needs it is generally the moment when they have the least capacity to research it.
Spending half an hour understanding how the system where you live actually works, before you need it, is among the better uses of that time available.
A final caveat
Health system structures, entitlements and processes differ enormously between countries and change over time. The service where you live is the authoritative source for how it works.