A resource guide for preparing yourself and your loved ones for the worst case scenario before a worst case scenario happens. 

Disclaimer: This article does not constitute legal or medical advice. Please consult a licensed attorney (US) /solicitor (UK) for legal advice, and a medical professional for medical advice. The contents of this article are merely for basic informational purposes based on personal lived experiences as a medical patient and disability advocate. 

This article focuses primarily on how these processes work in the United States. 

What is an Advance Directive?

An Advance Directive is a broad legal document that outlines your wishes and preferences in the event that you cannot communicate on your own due to a medical crisis. It ensures that your values and preferences for healthcare are upheld, particularly during an end-of-life scenario. 

Any person of any age can face an unexpected illness or accident that could cause one to not be able to communicate their medical wishes themselves. When you are of legal age (typically 18+), it becomes more important to appoint one or more trusted person(s) to help you communicate via an Advance Directive, as your decision-maker may not be as readily apparent as it is when you are a minor (wherein a parent/legal guardian tends to be the default). 

Advance Directives can assist you and your loved ones in knowing what to do in the event of a medical emergency. It is best to create an Advance Directive and put it in place while you are able to think clearly, explore options, and ask questions. 

It is recommended that you review and update your Advance Directive every year. As time goes on, your wishes may change— so be sure to relay any alterations to your loved ones, and re-submit new forms to your medical team if/when changes are made. 

Creating an Advance Directive

1. Take time to reflect on what you would want your end-of-life care to look like. 

This can include your personal and/or religious values and support, where you want to be during palliative care (in-home support vs. a medical facility), who you want to be the primary and/or secondary decision makers, what kinds of treatments you do or do not want, and if you want to impose a Do Not Resuscitate (DNR) order. 

It is a fantastic idea to discuss a DNR with your provider before resuscitation becomes necessary. Understanding the risks and benefits of such a procedure is a part of making an informed decision for your medical care. Some people may be too fragile prior to a serious medical emergency to make resuscitation a safe and positive outcome; in which case, a DNR order may be a better option. 

Think about what Quality of Life looks like for you, what fears or concerns you may have, and your thoughts on different scenarios and outcomes. You can consult with your doctor, social worker, family members, friends, support groups, and research topics online— anyone and anything that is helpful in bringing you peace of mind. Being informed about what options are available is extremely beneficial when making decisions about your medical care. 

Questions you may ask yourself in order to write a clear Advance Directive:

• What does a good day look like for you? Does that include time with family and friends? What daily activities are important to you? What do you need to enjoy life? 

• What and/or who supports you through difficult times? You can include your family, friends, pets, faith/spirituality, culture, etc. 

• What matters to me through the end of my life? Some factors may include your overall independence, being able to spend time with loved ones, being able to recognize loved ones, etc. 

• What are my concerns for medical treatment? Am I familiar with my options? Do I feel like I will get enough care, or alternatively, too much? 

• Who do I want to make medical decisions? Do you want a say in every healthcare decision, would you leave decisions with your healthcare team to do what they think is best, or somewhere in-between? 

• Do I want to know how quickly an illness is progressing? 

• Do I want those close to me to know all the details of my health, only the most important details, none, or a combination? 

If you have an Assistance Animal (service dog or emotional support animal), you may include: who should care for them, how frequently you’d like them to visit you if you’re in a medical facility, if they must be returned to a program or breeder (refer to your contract, if applicable), and any other related specifics. You may also wish to leave detailed instructions and copies of your Assistance Animal’s vaccines, veterinary contact and records, training records, program/breeder contracts, etc. in a safe place, and with whoever you choose to care for them in the event of a medical emergency. 

If you are religious or spiritual, it can be helpful to have a chaplain/clergy person (or similar) picked out in advance if you are wanting religious or spiritual support. You may also be interested in having a Death/End-of-Life Doula selected and listed in your Advanced Directive.

2. Communicate your wishes and discuss options with your loved ones and medical team. 

Discussing specifics with your medical practitioner is wise, as they will be able to help you make informed decisions based on your medical history and individual care needs. They can address specific questions you may have regarding the use of more invasive life-support methods, such as: ventilators, feeding tubes, ECMO, ports/PICC lines, etc. If you have specialists, you can consult with them on condition-specific questions and procedures. 

It is also wise to verbally communicate your care needs and wishes to loved ones prior to the event of an emergency. Doing so ensures that your selected Agent(s) are aware of your wishes in a calm and controlled setting so that they can be prepared beforehand. 

You can further clarify any of these details in a Living Will, which is a type of Advance Directive that is typically limited to a terminal illness scenario. 

3. Filling out an Advance Directive 

Most major hospitals, medical facilities, and state agencies on aging & long-term care have pre-formatted documents that you can fill out which align with your state’s legal requirements. 

When filling out your forms:

• Have your witness(es) readily available to watch you complete and sign your Advance Directive 

• Use black ink or a computer program to help you fill in the document 

• Write clearly or type your entries 

• Put your name and the date on every page

• Use initials rather than checkmarks or X’s to mark boxes 

Distribute & maintain copies of your Advance Directive

Distribute copies of your Advance Directive to your:

• Healthcare Agent(s)/Representative(s)
• Medical provider(s)
• Local hospital (which can be helpful even if you are traveling when a medical emergency occurs, as many hospitals have connecting systems) 
• Attorney

These forms can be shared with any people you feel would be helpful in the event of a medical emergency, such as your: child(ren), grandchild(ren), close friend(s), or clergy person. Be sure to retain and maintain a copy of your Advance Directive in a safe and easy to locate place. 

If updates and changes need to be made, you should issue new copies to the aforementioned parties. If you are concerned about any mix-ups or confusion when submitting changes, you can always ask for previous versions to be removed/nullified. 

In order to meet legal requirements, an Advance Directive typically must be in writing and signed. Many states in the U.S. require two adult witnesses, and some states require notarization. When you name an Agent, they typically cannot participate as a witness, but every state’s laws surrounding Advance Directives vary— so it’s best to consult an attorney for the specific requirements in your state/province/country.

Witnesses typically must be:

• 18 years of age or older
• Not related to you by blood or by marriage 
• No interest or right to your estate 

A social worker can help you find witnesses that are not involved in the interests of your estate if you do not have non-partial witnesses readily available. 

Advance Directive vs. Living Will

A Living Will is a type of Advance Directive that is typically limited to a terminal illness scenario. An Advance Directive can be utilized in a broader range of circumstances related to being unable to communicate your own wishes (such as medical events like a stroke, coma, dementia, etc.), but can often include the specifics of a Living Will if your health declines to a terminal condition. 

While the two are related and often combined into one document, an Advance Directive typically contains more than just a Living Will’s scope. 

Living Wills outline your specific medical wishes for end-of-life care, and provide clear instructions to doctors and family. This can reduce the stress of decision-making, and ensures your preferences for treatment are followed when you are incapacitated. 

What a Living Will Covers 

• Life Support: Artificial respiration (ventilator), hydration/supplementation (feeding tube), circulation (dialysis or ECMO), etc. 

• Resuscitation (CPR) or Do Not Resuscitate (DNR): If you want medical providers to attempt to revive you if your heart stops

• Pain Management: Your preferences for palliative or comfort care (use of medications and other therapies) 

• Organ Donation: Your wishes regarding donating organs and/or tissue

• Body Donation: If you wish to donate your body to science via a medical school, research facility, or similar 

Medical Power of Attorney

A Medical Power of Attorney (also known as a Healthcare Agent) is a person you appoint to make medical decisions on your behalf if you are unable to communicate or speak for yourself during a medical event. This person is often included and given permission to make decisions in your Advance Directive. 

Your Medical Power of Attorney/Healthcare Agent should be:

• Someone you trust and communicate with; this can be a: family member, close friend, licensed professional, or occasionally a social worker 
• 18 years of age or older
• Able and willing to speak and make decisions on your behalf 
• Aware of your wishes, needs, and wants 
• An advocate for you when working with medial practitioners 
• Capable of carrying out your wishes, even if an issue is sensitive 

Palliative Care

When you are facing a serious illness, Palliative Care can help improve your quality of life and provides specialized medical care that is focused on reliving the severity of symptoms. You can receive palliative care regardless of the diagnosis or stage of illness, but common conditions under which palliative care is given include (but is not limited to): cancer, heart failure, COPD, lung disease, kidney failure, liver failure, ALS, Parkinson’s, Dementia, and more. 

Palliative Care is often paired with curative treatments and addresses:

• Physical pain
• Mental wellbeing
• Spiritual needs
• Familial/caregiver supports 
• Finances and other practical concerns 

How Palliative Care Works

Typically, palliative care is a collaborative coordination between your existing medical team and other doctors, nurses, caregivers, social workers, and a chaplain (if wanted). Oftentimes, your doctor or care team will need to write a referral for palliative care. 

You can receive palliative care while in the hospital, in outpatient clinics, or at home. 

Palliative Care vs. Hospice

Palliative Care can be offered much sooner after the onset of a serious illness, whereas Hospice focuses specifically on end-of-life care.

Hospice

Hospice is a type of palliative care that typically begins after curative treatments are stopped and there is little to no expectation of an improvement in the patient’s quality of life. It is typically started when the prognosis for life expectancy is 6 months or less, usually requiring a doctor’s certification. The focus is on comfort, dignity, and preserving remaining quality of life until the patient passes on. 

What Hospice entails: 

• A team effort between doctors, nurses, counselors, social workers, and family members, as well as volunteers or a chaplain (if applicable) 

• Providing services such as: pain and symptom management, personal care aid (bathing, dressing, etc.), emotional and/or spiritual aid, medical equipment (walker, hoyer lift, wheelchair, etc.) and more 

• The setting can be: in-home, in a hospice center, nursing home, assisted living, or hospital

Levels of Hospice Care

1. Routine Home Care: Care that is provided routinely in the patient’s home, ranging from a couple hours per week to several hours
2. Continuous Home Care: More intensive, short-term care (often 1-5 days) at home for acute crises (typically a minimum of 8 hours of skilled nursing care per day, along with supplemental caregiver support for daily living activities)
3. General Inpatient Care: When symptoms are too severe to be managed at home and must be done in a facility 
4. Respite Care: Short-term inpatient care to give primary caregivers a break (typically up to 5 days at a time). Very helpful in preventing caregiver burnout

Medicare typically covers the cost of hospice care once a patient qualifies, including services and supplies related to the terminal illness— but not curative treatments. 

After Death (AD)

Inevitably, we all must die one day. Whether this occurs at home or in a medical facility, the procedures that follow are very similar.  

Immediate Steps

If you’re in the hospital or a medical facility when you die, staff will confirm the death and time of death, notify your next of kin, provide support, then move the body to the hospital mortuary until family arranges transfer to a funeral home. If organ donation is a factor, the hospital staff will discuss the process with the patient’s next of kin. The hospital will often issue legal documentation so that your family can apply for a death certificate. 

Hospitals also typically have social workers and bereavement support, and can aid your loved ones in grief support and documentation to take time off of work. They’re also very helpful in coordinating paperwork necessary to facilitate the legal processes that follow. 

If your death happens at home, emergency services should be notified for official pronouncement of death, unless a hospice nurse is already on-site and can declare the death. If the deceased was an organ donor, notify the medical team immediately. Occasionally, a coroner may come to pronounce the death and remove the body. A funeral home should also be contacted for removal/transfer of the body and arrangements for burial/cremation/etc. 

Your next of kin should notify key people, such as other close family members, close friends, and the deceased’s employer (if necessary). Arrangements should be made for any children and/or pets as soon as possible. Ensure the deceased’s home is properly secured, along with any valuables and firearms. 

Outlining your wishes for funeral services, celebration of life, burial, cremation, etc. can be very helpful in facilitating easier management of these affairs for your loved ones. It can be very difficult to make decisions that everyone is happy with if the deceased hasn’t already given clear instructions about their own wishes, especially in larger and blended families. 

In the Days & Weeks After 

Once a death certificate has been issued, the person in charge of your affairs should get 10-15 (or more, if needed) certified copies for financial and legal tasks. 

In terms of legal and financial matters, everyone’s situation varies depending on the plans that were previously put into place by the deceased. 

What happens if I die without a will in place? 

If the deceased had no plans, such as not having a will and/or trust set up, state law (intestate succession) typically dictates an estate representative (executor), inheritance, and probate. Whoever is in charge/next of kin should begin the probate process. This can be a long and arduous process, and may not align with your wishes. 

If There is a Will and/or Trust in Place:

If they did have plans, then next of kin should refer to the deceased’s will, trust, and executor of the estate. Sometimes, the executor of the estate will be the law firm or attorney who was hired by the deceased. Oftentimes, it is one or more family member(s). 

Whoever is in charge of affairs should contact any of the deceased’s lenders, employers, unions, business partners, social security, utility companies, etc. as soon as possible. If you are planning for your death and want to make things easier for whoever you’ve appointed to manage your affairs, leaving a detailed list with contact numbers and names is extremely helpful. 

Probate

Probate is a court-supervised legal process that occurs after a person has died. The process includes: proving a will’s validity, identifying and valuing a deceased’s person’s assets and property, paying their debts and taxes, and distributing remaining property to heirs or beneficiaries according to the will or state law. 

While probate ensures a deceased’s person’s final affairs are settled correctly, it can be a lengthy, costly, and public process. Probate typically takes 6-12 months to complete on average; simple estates may close in under 6 months, while probate for complex estates can take a year or more to complete. Fees for attorneys, court, appraisals, and executors can be quite high, at 2-5% or more of the estate. While they do cost money, a good probate attorney can help navigate the complexities efficiently and may even speed up the process. 

Trusts can be an excellent option to consider if you want to avoid the probate process and alleviate stress for beneficiaries. 

In some cases, probate may be avoided if the estate is small, if beneficiaries have already been designated (such as already being named in a Life Insurance Policy, 401(k), IRA, etc.), if your assets are jointly owned with a spouse, if your debts exceed your assets, or based on state laws. 

Wills

A will -also known as a ‘Last Will and Testament’- is a legal document that outlines a process for what happens after the testator (person making and signing the will) passes away. It ensures that your wishes are carried out to your specifications in the event of your death, rather than allowing the state/state laws to decide what happens.

Wills specify how a person’s assets and property should be distributed, who should be the executor (responsible party) of a person’s estate, who should be the guardian for minor children after their death, and more. 

State laws do not always match the intentions a person may have for their estate/assets, so appointing an executor and having a will in place can significantly help in preventing conflict from arising. 

Types of Wills

There are several types of wills, and some are more commonly used than others. Some will types do not have as much legal merit as others, and some will types are not recognized by every state’s laws— so it’s extremely important to familiarize yourself with the differences, and consult a licensed attorney if you have any questions regarding wills.

Common types of wills include:

Living Will: Also known as an Advance Directive, this document specifies your healthcare wishes if you are unable to communicate. 

A Living Will/Advance Directive differs from a Last Will & Testament in the sense that a Living Will is specific to healthcare wishes and does NOT include any details about your assets/estate, executor, beneficiaries, etc. like a Last Will & Testament does. 

Simple Will: A basic document that names an executor, beneficiaries, and guardian(s) for minor children. 

Testamentary Trust Will: This type of will creates a trust upon your death in order to manage assets for your beneficiaries (such as children) until they reach a certain age or a certain condition is met.

Mirror Wills: Commonly used for married couples, Mirror wills are separate -but nearly identical- wills for spouses that allow for future changes by a surviving spouse. 

Joint Will: A single document used for married couples, but typically prevents a surviving spouse from making changes; even under special or complex circumstances. This type is not recommended as frequently due to lack of flexibility. 

Holographic Will: A type of will that is handwritten in its entirety by the testator. While one of the simplest types of wills, it can often be a risky type for complex estates. Legal requirements and validity vary by state, but a Holographic Will must typically clearly express testamentary intent (like naming beneficiaries, a personal representative/executor, etc.), and must be signed. Some states do not require Holographic Wills to be witnessed or notarized, but notarization can help the probate process.

Holographic Wills are occasionally challenged in court regarding authenticity, and they can be more easily lost, discarded, or destroyed if it is not given directly to an attorney or trusted person. 

It is extremely important to check with your state laws and an attorney before choosing this option to ensure your wishes are fulfilled. 

Pour-Over Will: Directs assets that are not yet in a trust to be “poured over” into an existing trust. This type of will is helpful in catching any assets from slipping through the cracks and preventing them from being distributed by state laws. 

There are also verbal wills, often referred to as “deathbed wills” (how ominous), but we won’t be covering this type very thoroughly as they’re often extremely difficult to support or prove in court/probate. If you do choose to go the verbal will route, it is often recommended to do so via video, so there is some form of documentation available that shows the person making the will. Though, most legal experts encourage a written will— and for good reason. 

Cost to Write a Will

The cost to write a will varies widely, and is often dependent on how many factors are involved in your will. The more assets and beneficiaries, the more complex the will. While you can DIY your will (typically through the Holographic Will type), it is not often recommended. There are also online forms you can use to create a will, but many of these pre-formatted documents fail to meet the nuances of every state’s legal requirements. 

Here’s an estimated cost list for the average costs per route: 

DIY/Holographic Will: Typically free ($0), but risky; this type may not be valid in every state and you may face legal challenges.

Online Services/Templates: $20-$60 for basic wills; $400+ for more complex wills and comprehensive options, such as trusts.

Hybrid (Online Form + Attorney Review): $500-$2,000+

Estate Planning Attorney (Flat Fee): $250-$1,000+; the more complex, the more expensive. 

Estate Planning Attorney (Hourly Rate): $100-$650/hour; this option is most common for those with complex wills and trusts. 

Whichever will type you choose, it is always recommended to consult a licensed attorney to ensure that all state law requirements are being met, so that your will is executed exactly how you intend it to be. If you move to a new state, it is wise to revise and adjust your will with an attorney licensed in your new state. Wills can be very simple or extremely complex; it primarily depends on the amount and types of assets you have/your estate size, how many beneficiaries will be listed, and more.

The more factors involved, the more important it is to cover your bases with the help of a professional. 

Trusts

A trust is a legal arrangement where a person (grantor) transfers assets to a third party (trustee) to hold and manage for those you wish to receive your assets (beneficiaries). Trusts outline specific rules for asset distribution, which helps avoid probate, offers tax advantages, and provides wealth protection. If you have a larger estate, you may consider a trust as an option, especially if any of your beneficiaries are minors. 

Assets and property transferred to a trust are owned by the trust; not by you. This often allows the bypass of the court system (probate) so that your assets go directly to your beneficiaries privately and quickly. 

Trusts vs. Wills

While wills typically only take effect after death, trusts can be activated while you are still alive, if you become incapacitated, and after your death. Wills also typically become public record, whereas trusts tend to remain completely private. 

The main advantages of utilizing a trust are privacy, tax advantages, and the avoidance of probate. However, you may have to retitle your assets into the trust’s name, which can be a downside to some. 

Oftentimes, wills and trusts are used together to create a comprehensive estate plan. 

Types of Trusts

The two major types of trust structures are revocable and irrevocable. A revocable trust -often called a Revocable Living Trust- can be changed or altered after it is created, whereas an irrevocable trust cannot be changed. 

While both trust types typically avoid the probate process, irrevocable trusts tend to offer far less control during life. 

Testamentary Trust: This type of trust is created upon your death via a will, in order to manage assets for your beneficiaries (such as children) until they reach a certain age or a certain condition is met. 

Joint Trust: Common for married couples, a Joint Trust is a single trust document created by two people to hold and manage their combined assets. This type offers simplicity, unified control, and easier administration compared to two separate trusts. Drawbacks may include less flexibility for different beneficiary wishes, complexities if assets aren’t truly shared, and challenges with blended/mixed family structures. For complex situations, individual trusts may be a better option. 

Blind Trust: A Blind Trust is more common for business executives, politicians, lottery-winners, and anyone in a high-profile situation who may want to avoid conflict of interest. The owner of the trust transfers assets into the trust, an independent trustee (often a financial professional) has full control of the trust, and the independent trustee makes all the buying, selling, and holding decisions. The owner of the trust is “blind” to the trust’s holding and transactions. The owner remains the beneficiary and receives income or assets from the trust, but doesn’t know the underlying investments. 

Common Specialized Trusts

Special Needs Trust: This trust type allows a disabled beneficiary to receive financial support without losing eligibility for essential government benefits like Supplemental Security Income (SSI) and Medicaid. The trust holds assets for the beneficiary’s benefit, which is managed by a trustee, and helps pay for supplemental needs beyond basic food and shelter covered by public assistance programs. It can help pay for education, recreation, counseling, and medical services/mobility aids, and more, which public assistance would not typically provide. 

The distribution of assets for a Special Needs Trust is different than most other trust types. The funds must be managed by a trustee who pays funds directly to third parties for goods and services. Giving money directly to the beneficiary, or paying for food and shelter expenses, can reduce or eliminate public benefits altogether. Doing so would essentially nullify the need for a SNT in the first place. 

There are different types of Special Needs Trusts (SNT). 

A Third-Party SNT (funded by someone other than the beneficiary, such as family members) typically does not require a Medicaid payback provision, unlike a First-Party SNT (funded by the disabled person’s own assets). The Medicaid payback provision is often invoked upon the beneficiary’s death, and means that the state can recover costs for providing medical assistance through Medicaid programs. For a First-Party SNT, the beneficiary typically must be under the age of 65 when the trust is established. 

First-Party SNTs must be irrevocable, or unable to be modified or terminated without court permission. A Third-Party SNT can be revocable or irrevocable. 

A Pooled SNT is usually managed by a non-profit organization, who then pools funds from many different beneficiaries for investment purposes, while maintaining separate sub-accounts. Pooled SNTs are typically used for smaller amounts of money and may have a partial payback provision to the non-profit for managing the trust. 

Due to the complexity of federal laws, state laws, and regulations of public assistance programs, it is highly recommended to work with a licensed attorney who is experienced in special needs planning. 

Charitable Trust: This type of trust allows you to benefit yourself, your beneficiaries, and a charity all at the same time. Charitable Trusts are irrevocable and established for charitable purposes, though some jurisdictions may have a more specific definition for “charitable organization” than others. There are certain tax benefits offered for charitable trusts and are often a tax-efficient way to support a charity. Various types of charitable trusts types exist, and they each have their own structure. 

Irrevocable Life Insurance Trust: A non-changeable legal trust that holds a life insurance policy. It is designed to keep the death benefit out of your taxable estate, to help pay estate taxes, and can provide tax-free funds for beneficiaries. Upon your death, the payout goes to the trust instead of your estate, which helps avoid estate taxes and creditors. 

Spendthrift Trust: In cases where a loved one’s spending habits or personal circumstances would put their inheritance at risk, a Spendthrift Trust can be a useful option to consider. It can be customized to help protect assets from creditors and ensures beneficiaries receive funds responsibly. For example, instead of a large payout, the trust can be tailored to provide a monthly allowance to prevent prematurely depleting funds. Assets remaining in the trust are the property of the trust; not the beneficiary’s personal property. 

Generation-Skipping Trust: Primarily created for estate tax purposes, a Generation-Skipping Trust allows a grantor to transfer assets to beneficiaries that are two or more generations younger (such as grandchildren or great-grandchildren). It’s a strategy that helps preserve family wealth by potentially bypassing one layer of estate taxes. The grantor’s children may still be able to receive income from the trust during their lifetime, but since they do not own the principal, it is less susceptible to estate taxes when they die. This trust type is typically irrevocable. 

The grantor can outline specific conditions for how and when funds are distributed to the younger beneficiaries to ensure the money is used responsibly. Terms may include using the funds for education, health, or distribution upon reaching a certain age. 

There are more trust types than what is listed here, so be sure to research your options and what is available in your state/province/country. 

If you decide to utilize any type of trust(s), you should hire a licensed estate planning attorney to help you. You can also hire a Certified Financial Planner to help you plan the trust’s structure, goals, assets, and a trustee, but you will still need an attorney to draft the legally binding documents and ensure their validity. Trusts are a great way to protect your assets and your beneficiaries, especially when combined with a will. This is one arena where online forms just don’t really cut it. 

Final Notes

Death is a very sensitive topic for many, but having clear plans in place via an Advance Directive, Living Will, Medical Power of Attorney, Will, and Trust(s) can significantly ease the burdens and stress of the logistical elements of dying, so that your loved ones can focus on the grieving process. Having personally been through this process with loved ones means that we understand what it’s like to go through the process without any guidance or plans in place, and we sincerely want better for our readers and their families. 

If you have the means and ability to plan your Advance Directive and estate through a will and/or trust(s), we highly recommend doing so. It is also commendable to include separate plans and lists for what to do in the event of your death, who to contact, and how you wish to be celebrated. Anything you can do to make life after death easier for your loved ones is one of the kindest final gestures you can make. 

As always, please consult with a licensed estate planning attorney for any legal questions you may have, and consult with a licensed medical professional if you have medical questions.