Advance care planning isn't about giving up — it's about making sure your own values guide your care if you're ever unable to speak for yourself. This is especially relevant with advanced heart failure, an LVAD, or transplant, where serious decisions can arise quickly.
What This Actually Means
Two main tools do most of the work:
- A healthcare proxy (also called durable power of attorney for healthcare) — naming someone to make medical decisions if you can't
- An advance directive / living will — writing down your own wishes about specific situations, like life support or resuscitation preferences
Neither is only for end-of-life. Both protect you at any point where you can't communicate — including temporary situations like sedation during a procedure or a sudden acute illness.
Why This Matters Especially in Advanced Heart Disease
Conditions like advanced heart failure, cardiogenic shock, and complications of LVAD therapy can change quickly, sometimes within hours. Having these conversations before a crisis means decisions reflect what you actually want, made calmly — rather than default decisions made in an emergency by people guessing.
Key Concepts, in Plain Terms
- Healthcare proxy / power of attorney: the person legally authorized to make medical decisions for you if you can't. Choose someone who knows your values and can advocate under pressure — and talk to them directly about what matters to you, not just fill out the form and move on.
- Advance directive / living will: your own written wishes, often addressing things like use of a ventilator, CPR and resuscitation preferences, and feeding tubes in specific scenarios.
- DNR (Do Not Resuscitate) order: a specific medical order, distinct from the documents above, that your doctor writes based on a conversation with you — worth discussing specifically if you reach a point where this fits your goals.
- Goals of care conversation: an ongoing conversation with your care team about what matters most to you — comfort, independence, time with family, aggressive treatment — that guides medical decisions as your condition evolves. Not a one-time form.
This Is Especially Relevant If You Are
Being evaluated for or living with an LVAD (since device complications can be sudden and serious), being considered for or declined for transplant, living with advanced or end-stage heart failure, or facing a major cardiac surgery.
Palliative Care — A Common Misconception
Palliative care is not the same as hospice, and it doesn't mean "giving up." It's a layer of support focused on symptom relief, quality of life, and complex decision-making that can be provided alongside active, aggressive treatment at any stage of serious illness — including while pursuing transplant or living with an LVAD. Many advanced heart failure programs involve palliative care specialists specifically to support these conversations, without that meaning treatment is being withdrawn.
Practical Steps
- Talk to your family or proxy about your values, not just logistics
- Put your wishes in writing using your state's specific forms (requirements vary by state)
- Share copies with your proxy, your cardiologist, and your hospital
- Revisit the conversation periodically, especially after a significant health change — these documents aren't meant to be set once and forgotten
Common Questions
Does this mean my doctors will give up on me?
No — quite the opposite. Goals of care conversations ensure the care you get matches what you actually want, whether that's pursuing everything possible or a different balance.
Do I need a lawyer?
Not necessarily — many states have free, simple advance directive forms, though a lawyer can help with more complex situations.
Can I change my mind later?
Yes, always — these documents can and should be updated as your situation or wishes change.
Isn't this just for older or terminally ill people?
No — unexpected situations (a bad reaction to anesthesia, a sudden complication) can affect anyone, which is why designating a proxy especially is worth doing regardless of age once you have a serious diagnosis.
What's the difference between a healthcare proxy and a living will?
A healthcare proxy (or medical power of attorney) names a specific person to make decisions on your behalf if you can't; a living will spells out your specific wishes for particular situations — most people benefit from having both, since a proxy can't always anticipate every scenario your living will can address in advance.