Advance Care Planning for Parkinson's Disease

Advance care planning is the process of understanding, discussing, and documenting your wishes for future medical care — particularly the care you would want if you become unable to speak for yourself. For people with Parkinson's disease, advance care planning is not optional. It is essential. Parkinson's is a progressive disease that can, in its later stages, affect cognitive function, speech, and the ability to communicate decisions. The time to plan is now, while you can fully participate.

This is not a comfortable topic. Most people do not want to think about a time when they cannot speak for themselves, cannot swallow, or need someone else to make medical decisions on their behalf. But research on advance care planning consistently shows that people who plan ahead — who document their wishes and share them with their families and medical teams — receive care that better matches their values, experience less unwanted aggressive treatment, and cause less decisional burden and guilt for their loved ones.

Why Advance Care Planning Is Especially Important in Parkinson's

Every person with a serious illness should have advance directives. But Parkinson's disease creates specific urgency for several reasons:

• Cognitive decline is common. Approximately 24 to 31 percent of people with Parkinson's develop dementia over the course of the disease, and a significant additional proportion experience mild cognitive impairment. When cognitive function declines to the point where a person cannot understand or communicate their wishes, the window for advance care planning has closed. This is why neurologists and palliative care specialists recommend completing advance directives early in the disease — ideally soon after diagnosis, when cognitive function is intact.
• Speech may deteriorate. Parkinson's affects the muscles used for speech, and many people with advanced PD have difficulty being understood verbally. Written directives ensure your wishes are known even if you cannot articulate them.
• PD creates specific decision points. Unlike some illnesses where end-of-life decisions center on a single event (cardiac arrest, ventilator withdrawal), Parkinson's involves a series of gradual decisions: when to stop driving, when to accept a feeding tube, when to transition from active treatment to comfort-focused care, whether to hospitalize for aspiration pneumonia or manage at home. Advance directives that address these Parkinson's-specific scenarios are far more useful than generic forms.
• Families need guidance. Without documented wishes, care partners must guess what the person with PD would want. This is an enormous emotional burden, and research shows that surrogates accurately predict patient preferences only about 68 percent of the time. Explicit documentation removes the guessing.

The Key Documents

Advance Directive (Living Will)

An advance directive — also called a living will — is a legal document that specifies what medical treatments you do or do not want if you become unable to make decisions. It typically addresses:

• Cardiopulmonary resuscitation (CPR). Whether you want CPR attempted if your heart stops. For people with advanced Parkinson's disease, this decision is particularly important: CPR success rates are significantly lower in elderly or debilitated patients, and even when CPR restores a heartbeat, the quality of life afterward may be severely compromised. This is not an argument against CPR — it is context for an informed decision.
• Mechanical ventilation. Whether you want to be placed on a breathing machine. Some people with PD specify that they would accept short-term ventilation for a reversible condition (such as a treatable pneumonia) but not long-term ventilation with no prospect of recovery.
• Artificial nutrition and hydration. Whether you want a feeding tube (PEG tube) or intravenous fluids if you can no longer eat or drink safely. Severe dysphagia is common in advanced PD and is a frequent trigger for this decision. Some people choose comfort feeding — hand-feeding for pleasure even with aspiration risk — over tube feeding. Neither choice is wrong.
• Hospitalization. Whether you want to be transferred to a hospital for acute events (pneumonia, falls with injury) or prefer to receive treatment at home or in a hospice facility.
• Antibiotics. Whether you want antibiotics for infections like pneumonia. Some people with advanced PD choose to accept antibiotics for comfort (fever reduction, easier breathing) but not as a life-prolonging measure.

Healthcare Power of Attorney (Healthcare Proxy)

A healthcare power of attorney designates a specific person — your healthcare proxy or healthcare agent — to make medical decisions on your behalf when you cannot make them yourself. This is separate from a financial power of attorney and requires its own document.

Choosing Your Healthcare Proxy

This is arguably the most important advance care planning decision you will make. Your proxy should be:

• Someone who knows your values. Not just your medical wishes, but your deeper values — what makes life worth living for you, what you consider an acceptable quality of life, what matters most.
• Someone who can advocate under pressure. Medical crises are stressful, and healthcare providers may push toward intervention. Your proxy needs to be able to say “no” on your behalf if that is what your wishes require.
• Someone who will follow your wishes, even if they disagree. This is the hardest criterion. Your proxy's role is not to decide what they would want — it is to decide what you would want. Make sure the person you choose understands and accepts this distinction.
• Someone who is available. Practically, your proxy needs to be reachable in an emergency and able to travel to a hospital if needed. Consider naming an alternate proxy in case your first choice is unavailable.

POLST (Portable Medical Orders)

POLST — Physician Orders for Life-Sustaining Treatment — is a medical form that translates advance directive wishes into actionable medical orders. Unlike an advance directive, which is a legal document that requires interpretation, a POLST is a physician order that emergency responders and healthcare providers must follow immediately.

POLST forms are available in most states (the program goes by different names in different states — MOLST, POST, COLST). They are typically appropriate for people with serious advanced illness — not for healthy individuals. For a person with advanced Parkinson's, a POLST provides clear, unambiguous instructions about CPR, hospitalization, antibiotics, and artificial nutrition that travel with the patient across all care settings.

A POLST must be signed by a physician, nurse practitioner, or physician assistant and is reviewed periodically. It does not replace an advance directive — it supplements it. You can learn more and find your state's program at polst.org.

DNR and DNI Decisions

Two specific advance care decisions deserve individual attention because they are frequently misunderstood.

DNR (Do Not Resuscitate)

A DNR order means that if your heart stops beating, healthcare providers will not attempt CPR (chest compressions, defibrillation, emergency medications). It does not mean “do not treat.” A person with a DNR order still receives all other medical care — medications, oxygen, pain management, antibiotics, or any treatment they have consented to. DNR applies only to cardiac arrest.

For people with advanced Parkinson's, the DNR discussion should include honest information about CPR outcomes. In general, CPR success rates (defined as survival to hospital discharge with meaningful neurological function) are low for patients with advanced chronic illness. This does not mean CPR is never appropriate — but it means the decision should be informed rather than assumed.

DNI (Do Not Intubate)

A DNI order means that if you cannot breathe on your own, healthcare providers will not insert a breathing tube and place you on a mechanical ventilator. You can have a DNI without a DNR, or both. Some people with advanced PD choose DNI because mechanical ventilation in the setting of end-stage neurological disease rarely leads to recovery and can prolong a dying process that the person would not have wanted extended.

Having the Conversation

Advance care planning is not primarily a legal exercise — it is a conversation. The documents are important because they formalize decisions, but the conversations that produce them are where the real work happens.

Starting the Conversation

Most people find advance care conversations easier than they expected, but getting started is the hardest part. Some approaches that people with PD and their families have found helpful:

• Use a medical appointment as the catalyst. After a neurology visit, you can say: “The doctor talked about how my disease might progress. I think we should talk about what I would want if things get harder.”
• Start with values, not specifics. Instead of jumping to “Do you want a feeding tube?” begin with: “What does a good day look like for you? What makes life worth living? What would be worse than death?” These value-based questions produce more meaningful and more usable guidance than yes-or-no questions about specific treatments.
• Acknowledge the difficulty. “I don't want to have this conversation either, but I love you and I want you to know what I want, so you don't have to guess.”
• Have multiple shorter conversations. This does not need to happen in one sitting. In fact, multiple conversations over time tend to produce better, more nuanced advance directives than a single intense session.

Parkinson's-Specific Topics to Address

Standard advance directive forms address generic medical scenarios. For Parkinson's disease, the following topics are particularly important to discuss:

• Feeding tube decisions. If you develop severe dysphagia and can no longer eat safely, would you want a PEG tube for nutrition? Some people say yes; others prefer comfort feeding with accepted aspiration risk. Document your preference explicitly.
• Pneumonia treatment. Aspiration pneumonia is the leading cause of death in PD. Would you want hospitalization and IV antibiotics? Oral antibiotics at home? Comfort measures only? Your answer may depend on the stage of disease and your overall quality of life at the time.
• Continuation of PD medications. At the end of life, some families and providers consider stopping levodopa because the patient is no longer eating or the benefit seems minimal. But abrupt levodopa withdrawal can cause severe rigidity, pain, and a dangerous condition resembling neuroleptic malignant syndrome. Specify that PD medications should be continued (via crushed pills, liquid formulation, or transdermal patch) unless discontinuation is specifically part of a comfort-focused plan reviewed by a neurologist.
• Care setting preferences. Where do you want to spend the end of your life? At home? In a hospice facility? What would change that preference?
• Cognitive decline threshold. This is one of the most difficult conversations. Some people with PD specify that if they develop severe dementia and can no longer recognize family members, they do not want life-prolonging treatments. Others feel differently. There is no right answer — only your answer.

Making It Official

Legal Requirements

Advance directive requirements vary by state. Most states require:

• The person signing must be an adult with decision-making capacity.
• The document must be witnessed by one or two adults who are not named as healthcare proxies.
• Some states require notarization; others do not.
• Some states have specific statutory forms; others accept any clear written statement of wishes.

Free state-specific advance directive forms are available from the National Hospice and Palliative Care Organization (NHPCO) at caringinfo.org. An elder law attorney can help with more complex situations, but legal representation is not required for basic advance directives.

Distribution

An advance directive that no one can find in an emergency is useless. After completing your documents:

• Give copies to your healthcare proxy, your backup proxy, and your closest family members.
• Give a copy to your neurologist, your primary care physician, and any hospital where you receive care.
• Keep the original in an accessible location (not a safe deposit box — these are not accessible in emergencies).
• If you have a POLST form, post it in a visible location in your home (typically the refrigerator or front door) where emergency responders will look for it.
• Review and update your documents every one to two years, or after any significant change in health status.

For Care Partners

If you are the care partner of someone with Parkinson's disease, advance care planning may feel like it is about the person with PD. It is — but it is also about you. Every decision that is documented now is a decision you will not have to make in a crisis, alone, wondering whether you are doing the right thing. That is a gift that the person with PD gives you by planning ahead.

If your loved one is reluctant to discuss advance care planning, be patient but persistent. Avoidance is normal. Fear is normal. But the cost of not planning is borne by you — the person who will have to make impossible decisions with no guidance. You have the right to ask for this conversation, and you can ask more than once.