End of Life Options

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A crucial part of Advance Care Planning is to plan for the end of your life. Everyone over the age of 18 years old should engage in some level of end of life planning. Most are surprised to learn that the landmark cases regarding end of life rights all involve young people, young women in their twenties in fact. Remember that death is no respecter of age, and everyone over the age of 18 years old should begin to consider these questions:

If you are blessed with old age, or with time if you receive a terminal diagnosis, how do you want to die?
Do you want to be in a hospital receiving curative treatments until the very end? Do you want to be at home, receiving care that focuses on quality of life rather than curative goals? Or something in between?
What does it mean to you to have completed your life, and how will you write the ending to your life story? Posing and answering these questions is an important step in Advance Care Planning.

In order to answer these questions, you need to know your individual rights regarding your healthcare and end of life decision-making.

While there is no explicitly stated right to healthcare in the US Constitution or the Georgia Constitution, you have fundamental rights under the US Constitution though which certain implied rights related to your healthcare have been found. Through the years, the US Supreme Court, examining the liberty right using the ordered liberty analysis, has created a fundamental right to privacy, and bodily integrity. From those rights, several important healthcare rights ensued. Among those are:

Regarding Advance Care Planning and end of life decision-making, the current state of law is:

No one can be forced to undergo unwanted procedures or treatments
The state has a countervailing interest in preserving life
There is a clear and convincing evidence standard used when determining whether to allow an agent to remove life-sustaining equipment; an individual’s written instructions in an advance directive are considered clear and convincing evidence
States must honor advance directives
While an individual may forego or remove life-sustaining treatment, there is no constitutional right to assistance in dying or to engage a 3^rd party to assist

In addition, there are federal laws that provide rights and protections related to your healthcare and end of life rights, such as:

Finally, there are state laws in place which provide Georgia citizens with state-specific healthcare rights and protections, including laws which provide legal means for Advance Care Planning. As a citizen of Georgia, you enjoy the full protections of the US Constitution and federal law under the due process clause of the 14^th Amendment, and of the Georgia State Constitution and state law as a resident of the state.

The current state of the law regarding end of life decision making in Georgia is:

It is the patient’s right to determine their own medical treatment, and to be free of any unwanted healthcare services.
You have a right to execute an Advance Directive and have your wishes honored by your healthcare providers
You have rights and responsibilities as a patient in a Georgia medical office or healthcare facility under that facility’s Patient’s Bill of Rights, and also under the AHA and ACA’s Patient’s Bill of Rights
If you are terminally ill and in the last six months of life, there are several options available to you to help you to determine your course of treatment and services, and in some cases, the manner of your death. They are:
- Hospice Care
- Palliative Care, or a combination of both, and
- Voluntary Stopping of Eating and Drinking (VSED).
You have a right to receive information on all of these end of life options from your healthcare provider at any stage of health. Your right to informed consent for healthcare decision-making requires that providers provide you with all of the information relevant to your decision-making. If you are facing end-of-life decision making, you should be receiving information on all of these available options.

Georgia law provides four legal documents for Georgians to use in directing their healthcare and stating other end of life choices, including the Georgia Advance Directive for Healthcare. When properly executed, these documents will give you your best chance of having your rights respected at the end of your life.

Your advance directive, when properly executed, is legally binding in Georgia

In a 2016 Georgia Supreme Court Decision, Doctor’s Hospital of Augusta v. Alicea, (Georgia Supreme Court, 2016) the court found that providers must read and heed advance directives, and that it is the patient’s right, even speaking through an agent, to determine their course of treatment. It further found that the immunity provisions in the advance directive are based on the provider’s good faith effort to follow the patient’s wishes, which includes informing the patient and cooperating in a transfer if the provider cannot follow the patient’s wishes. In this case, the court found that the provider did not make a good-faith effort to follow the patient’s wishes. The legality of the advance directive has also been tried in other states and found to be legally binding.

In Alicia, the Georgia Supreme court fully affirmed that it is the patient’s right to determine their medical treatment and care, and stated that it is “the will of the patient, or her designated agent, not the will of the provider that controls.” In this case the Court unequivocally affirmed that:

it is the patient’s right to direct their own medical treatment
it is the responsibility of the patient or their healthcare agent to make sure providers have a copy of the advance directive
once the patient provides their advance directive, it is the provider’s responsibility to make it part of the patient’s medical file
for end of life care or treatment, the healthcare agent’s directions prevail over written instructions in the advance directive
the healthcare agent has priority over everyone, including a court-appointed guardian, in making healthcare decisions on behalf of the patient.
providers must follow the patient’s wishes or risk liability; however, they have statutory protection from liability if they respect the patient’s wishes and follow their directives

Other states’ cases on the authority of advance directives:

https://www.bostonglobe.com/2020/12/26/metro/hospital-staff-revived-mans-stopped-heart-he-sued/?p1=Article_Inline_Text_Link

https://www.nytimes.com/2021/01/22/health/elderly-dnr-death-lawsuit.html

https://patch.com/new-york/southeast/hudson-valley-activist-relieved-ruling-death-dignity-suit

Advocacy for expanded end of life options in Georgia:

In addition to these existing rights, Georgians for End of Life Options will be advocating for expanded laws and policies which improve existing laws and create new ones to give Georgians more options in end of life planning, such as:

A Dementia Advance Directive which several other states (New York, Washington) have enacted to help strengthen advance directives to stand even when the person has dementia; and
Medical Aid in Dying (MAiD). Georgia’s advance directive law includes an explicit prohibition on “mercy killing” on assisting another in death. We will advocate to allow for the option of assisted dying in our state as 10 other states and the District of Columbia have already done.

Hospice Care

Hospice care is a philosophy, or concept of care, which does not need to be connected to any particular location or practice. It addresses the patient’s whole health and is concerned with every aspect of the way the patient’s terminal illness may be affecting their life. Through an integrated, interdisciplinary team of professionals, hospice care provides the dying patient and their loved ones the tools to improve quality of life at the end of life, and help patients have a pain free death with dignity. Hospice care may be received in a free-standing hospice center, a hospital, a skilled nursing facility or other long-term care facility, or at home.

In Georgia, the driving force behind hospice care is the Georgia Hospice and Palliative Care Organization (GHPCO). They have been working for over 30 years in Georgia to ensure that every Georgian has access to excellent pain and symptom management and end of life, and that all their needs – physical, emotional, and spiritual -, are addressed.

Federal guidelines dictate a six-month prognosis, or less
Hospice patients no longer pursue curative treatment but focus on comfort care instead
Hospice services may include palliative care
Hospice services are covered by Medicare, Medicaid, and most private insurance plans
All diagnoses are accepted to receive hospice care
Services are provided by an integrated interdisciplinary team of professionals which include an attending physician, nurse, social worker, chaplain, and volunteer coordinator
Hospice care includes respite services for care-givers
Hospice care in Georgia is governed through the Department of Community Health; governing law for hospice care in Georgia may be found at: OCGA 31-7-173 through 179 (2010)

Palliative Care

Palliative care, like hospice care, is a philosophy, or concept of care, which does not need to be connected to any particular location or practice. It addresses the patient’s whole health and is concerned with every aspect of the way the patient’s illness may be affecting their life. Patients may be accepted into a palliative care program at any age or stage of health and do not require a terminal diagnosis to be eligible. However, a doctor’s order is needed to be accepted for palliative care services.

GHPCO is the leading force for palliative care in Georgia. In 2016, they worked along with other stakeholders and the Georgia General Assembly to enact HB 509, whose purpose was to: implement initiatives to improve quality and delivery of patient centered and family focused palliative care in Georgia; create the Georgia Palliative Care and Quality of Life Advisory Council; establish a state-wide palliative care and consumer and professional information and education program; and ensure that high quality patient centered palliative care is provided.

In the 2019-2020 session, HB 186 was passed which created the Office of Health Strategy and Coordination. Its director is tasked with creating reporting requirements for advisory councils, including the Georgia Palliative Care and Quality of Life Advisory Council, which will inform effective strategy development and execution.

You have a right to receive information about palliative care, regardless of age or state of health
Curative treatments may be pursued while receiving palliative care
A physician’s order is necessary for admission to services
Psychosocial support is available as part of the palliative care program
Georgia Medicaid does not cover palliative care
Palliative care may be provided in a healthcare facility or at home; however, access to non-hospital palliative care in Georgia has been rated as ‘poor’ in the National Hospice and Palliative Care Organization’s State Tool Kit
Currently palliative care services in Georgia are regulated by the Department of Community Health under Georgia Hospice legislation, OCGA 31-7-176; Georgia Rules and Regulations, OCGA 111-8-37-.03.

Death Doula

Death doulas, or End of Life Doulas (EOLD), are guides throughout the end of life process. They offer resources and compassionate care in dying. EOLDs aim to serve people in a way that achieves deeper meaning and offers greater comfort as death comes nearer.

Death can be a taboo subject for many cultures and many peoples. It is a great unknown. It is something we fear and cannot discuss, so we hide from it until we have a health scare or when a death happens to someone close to us. Then, in the chaos that ensues, decision-making becomes rushed, confusing, frustrating, angering…and complicated by grief.

End of Life doulas provide companionship, comfort, and guidance to those facing a terminal illness and/or death. This non-medical holistic support encompasses emotional, spiritual, and practical care. Resources can be offered to help the dying person, along with their family and loved ones, make informed decisions in a supportive environment. EOLDs can become involved any time in a person’s life. They can offer support when people are impacted by a life changing illness, after a terminal diagnosis, when death is imminent, or even after a death—to help with light grief support. Sometimes family members or loved ones of the person dying seek support and guidance from end-of-life doulas.

End of Life Doulas can provide emotional, spiritual, and physical support at a deeply personal and sensitive time. They assist people in finding meaning, creating a legacy project, and planning for how their last days may unfold. EOLDs also guide and support loved ones through the last days of a loved one’s life and ease the suffering of grief in its early stages.

Life Review – storytelling of a person’s life to include their Accomplishments, Values, and Impact in other’s lives. The stories can also offer opportunities to discover Regrets, Unfinished business, Grief, and Shame so these topics might find closure.
Legacy Work – The opportunity for the dying person to engage in a project to fill their last months and days with meaning and purpose. It can be a means to personalize an engaged activity to document values, memories and messages to the loved ones left behind.
Vigil Planning – Guided assistance to create a bedside plan for how the person would like to be cared for and made comfortable at a time when they might not be able to speak for themselves, and the EOLD can serve as an advocate for the individuals non-medical care choices.
Vigil – EOLDs can sit at the bedside with imminent death, and offer support to the grieving family. EOLDs can be watchful for anxiety or discomfort and offer non-medical interventions to reduce challenging responses during the final days and/or hours.

Voluntarily Stopping Eating and Drinking (VSED)

From birth to death we learn that food is how we care for each other. When someone we love is dying, not feeding them seems contrary to everything we know about how to care for someone. But feeding a dying person beyond the point where they no longer want to eat inhibits the natural dying process and can cause unnecessary suffering.

When a dying person tells you they no longer want food, the best way you can care for them is to stop feeding them. They may tell you verbally or simply by consistently refusing food. It may be because their body is shutting down or because they want to hasten their death due to unbearable suffering. Whatever the circumstances, understanding that the cessation of intake of food and water is part of the dying process and accepting it when it comes is the best way you can care for the dying person.

When stopping the intake of food and water is an option elected by the dying person in an effort to hasten their impending death, it is called Voluntary Stopping of Eating and Drinking. While the practice is not specifically legal in any state, individuals have rights regarding what happens to their body. Just as people can refuse medical treatment, they can choose not to eat or drink and can not be forced to do so.

The process of VSED mirrors the process in people who stop eating and drinking because their bodies are shutting down. Deprived of fluids, the body gradually begins to shut down organs and eventually will die, usually 10-14 days after stopping intake. Lack of liquid, rather than lack of food, is what leads to death.

VSED requires intensive support from caregivers, to keep patients comfortable, help them move as they become weaker, and help ease symptoms such as dry mouth and skin. People undertaking VSED also often benefit from emotional support to help keep them focused on their goal.

An excellent resource is a new book from experts on the medical, legal, and ethical aspects of VSED. A shorter overview can be found in this article.

Medical Aid in Dying (MAiD)

When one knows they are going to die imminently, the choice to die peacefully and without suffering rather than having a prolonged death is a choice that should be available to everyone, and loved ones who assist with facilitating this choice are helping one to pass more peacefully.

The pain and suffering that often accompanies end of life is frequently unavoidable. Despite the best hospice care, not all pain can be controlled, nor will every hospice patient have a peaceful end to their life. People, (unlike animals) can comprehend pain and suffering in relationship to the whole of their lives – what has happened, and what may happen – so the choice of whether to hasten one’s death is not one to be left up to a physician as we do for animals, as in euthanasia, but it is a choice is for the individual to make: a personal choice that considers one’s own definition of integrity and dignity.

Georgians for End of Life Options believes it should be a choice available to individuals who want to control the manner and timing of their deaths. Those who believe that they should allow their deaths to be directed by the medical professionals, and are willing to undergo any suffering that may come, and who do not want assistance in dying, do not have to have it.

Also consider, that if one believes they should be afforded all options available to extend their lives artificially, then they must also hold that one should be afforded the option of ‘opting out’ of life extending measures, and choosing instead for a peaceful death on their own terms.

Providing a legal option of MAiD honors the sacredness of life by allowing terminally ill people of sound mind to have individual choice at the end of their life. Having at least a measure of choice and control as one nears end of life is a basic fundamental freedom, a civil right. We believe that reverence for life should include a respect for the choices one makes for the end of their life. MAiD should be an option for all. All may not use it, but having the option is a “Prescription for Peace of Mind.”

MAiD Facts and Timeline in America

MAiD in Georgia

Georgia has specific laws against euthanasia, or “mercy killing.” However, since medical aid in dying (MAiD) is not euthanasia, and a case has never been brought concerning the legality of MAiD in Georgia, it remains to be seen whether Georgia’s mercy killing law would be found to apply to the act of a physician providing a prescription for medication to be used for the purpose of hastening the death of a terminally ill person.

Permitting Georgians to have the right to expanded end of life options, such as MAiD will do nothing to harm or interfere with the interest of those who oppose such options. However, not permitting it may create unintended harm because many states that have not may create “medical refugees” who choose to move to a different state at the end of their lives in order to have this option. In most cases, medical refugees give up the ability to die at home, surrounded by their loved ones. This is a terrible choice to have to make, and one that no Georgian should ever have to consider.

Our goal is to ensure that no Georgian will be faced with the daunting choice of having to become a medical refugee in order to ensure that their end of life choices will be respected. We will advocate for a MAiD law in Georgia, and work with other interested stakeholders across our state to help pass this legislation. Every Georgians should be able to decide for themselves what end of life options best reflect their own values and wishes.

Click here to see a list of Frequently Asked Questions on MAiD

Click here to see a one-page fact sheet on MAiD

Georgia Patient’s Bill of Rights

Georgia Law requires that healthcare providers and facilities recognize patients’ rights and responsibilities. Healthcare providers and facilities must provide the full text of this law to patients who request it. They are also required to provide this information in accordance with the Affordable Care Act and the American Hospital Association’s Bill of Rights.

Summary of Patient Rights and Responsibilities

Be treated with courtesy and respect, with appreciation of his or her dignity, and with protection of privacy
Receive a prompt and reasonable response to questions and requests.
Know who is providing medical services and who is responsible for his or her care.
Know what patient support services are available, including if an interpreter is available if the patient does not speak English.
Know what rules and regulations apply to his or her conduct.
Be given by the health care provider information such as diagnosis, planned course of treatment, alternatives, risks, and prognosis.
Refuse any treatment, except as otherwise provided by law.
Be given full information and necessary counseling on the availability of known financial resources for care.
Know whether the health care provider or facility accepts the Medicare assignment rate if the patient is covered by Medicare.
Receive prior to treatment, a reasonable estimate of charges for medical care.
Receive a copy of an understandable itemized bill and, if requested, to have the charges explained.
Receive medical treatment or accommodations, regardless of race, national origin, religion, handicap, or source of payment.
Receive treatment for any emergency medical condition that will deteriorate from failure to provide treatment.
Know if medical treatment is for purposes of experimental research and to give consent or refusal to participate in such research
Express complaints regarding any violation of rights

A patient is responsible for:

Giving the health care provider accurate information about present complaints, past illnesses, hospitalizations, medications, and any other information about his or her health.
Reporting unexpected changes in his or her condition to the health care provider.
Reporting to the health care provider whether he or she understands a planned course of action and what is expected of him/her
Following the treatment plan recommended by the health care provider.
Keeping appointments and, when unable to do so, notifying the health care provider or facility
His/her actions if treatment is refused or if the patient does not follow the health care provider’s instructions
Making sure financial responsibilities are carried out
Following health care facility conduct rules and regulations.
The patient has the right to file a grievance with the Georgia Composite Medical Board, concerning the physician, staff, office, and treatment received

Examples from Georgia Healthcare Facilities:

Piedmont Augusta/Medical University System

navicenthealth.org/patient-rights

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