A terminal diagnosis changes the priorities of everyone it touches. For patients and families, one of the most constructive steps in the period that follows a diagnosis is putting a clear plan in place. End-of-life planning is not about giving up, say experts in the field. Rather, it is about ensuring that a patient’s medical, legal, and personal wishes are documented, understood, and respected when they matter most.
This checklist outlines the key areas to address when planning end-of-life care, broken into manageable steps.
Establish Your Advance Directives
Advance directives are the legal foundation of any end-of-life plan. They document a patient’s wishes regarding medical treatment and appoint a trusted person to make decisions if the patient becomes unable to do so.
There are two primary documents to have in place:
- Living will: This is a written statement that specifies which medical treatments a patient does or does not want, including life-sustaining measures such as mechanical ventilation or artificial nutrition.
- Healthcare proxy / durable power of attorney for healthcare: This refers to a legal designation that names a specific individual, the healthcare agent, to make medical decisions on the patient’s behalf.
Both documents should be signed, witnessed, and stored in a location accessible to family members and medical providers.
Complete a POLST Form
For patients with a serious or terminal illness, a Physician Orders for Life-Sustaining Treatment (POLST) form carries more immediate clinical weight than a standard advance directive. Unlike a living will, a POLST is a physician-signed medical order that travels with the patient across care settings, from home to hospital to care facility. It covers specific decisions such as resuscitation preferences, hospitalization, and the use of artificial nutrition. Patients should complete this form in consultation with their primary physician or a planning specialist.
Clarify Resuscitation Preferences
A do-not-resuscitate (DNR) order instructs medical staff not to perform CPR if a patient’s heart stops or they stop breathing. This is a separate document from a living will and must be signed by a physician to be valid in a clinical setting. Patients should discuss this decision openly with their care team and ensure that their healthcare proxy is aware of and prepared to uphold their preference.
Understand Palliative and Hospice Care Options
Two care models are central to terminal illness planning, and understanding the distinction between them is important.
Palliative care focuses on symptom management and quality of life and can be received alongside curative or active treatment at any stage of illness. Hospice care, on the other hand, is a specific form of palliative care for patients who are no longer pursuing curative treatment and have a prognosis of six months or less. Hospice provides medical, emotional, and practical support for both the patient and family, typically in the home or a dedicated facility.
Families should ask their care provider about eligibility, coverage under Medicare or private insurance, and how to initiate a referral.
Organize Legal and Financial Documents
End-of-life planning extends beyond medical decisions. The following documents should be located, updated, and stored accessibly:
- A current will or trust
- Financial power of attorney
- Insurance policies, including life, health, and long-term care
- Bank account and asset information
- Beneficiary designations on retirement accounts and insurance policies
An estate attorney can assist with ensuring these documents are legally current and properly structured.
Communicate the Plan
A plan that exists only on paper provides limited protection. Patients should share their wishes directly with their healthcare proxy, close family members, and primary physician. Key documents should be kept at home in a known location and, where required, filed with the relevant care facility or hospital. Digital copies stored securely can serve as backups.
Revisit the Plan Regularly
End-of-life plans should be treated as living documents. As a patient’s condition changes, their preferences regarding treatment, care setting, and resuscitation may shift. Reviewing the plan at each significant medical milestone, under the guidance of an end-of-life consultant, ensures it continues to reflect the patient’s current wishes.
End-of-life planning is one of the most practical steps a patient and family can take following a terminal diagnosis. Having the right documents in place, understanding available care options, and communicating wishes clearly can help ensure that a patient’s preferences are respected at every stage of the process.
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