Supporting VSED in Hospice: End-of-Life Decisions

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When a terminally ill loved one expresses a desire to stop eating and drinking voluntarily (VSED), it can be a challenging and emotional situation for families. Understanding their wishes, providing support, and ensuring a comfortable end-of-life journey are essential. This article will explore how families can support their loved ones’ decisions and help alleviate suffering during this grim time.

What is Voluntary Stopping of Eating and Drinking (VSED)?

Sometimes, people who are extremely sick and near the end of their lives may decide to stop eating and drinking. This is called voluntary stopping of eating and drinking, or VSED for short. VSED means that a person stops taking any food or fluids by mouth. This can help them avoid more pain and suffering from their illness or treatments. VSED is a personal and serious decision that should be made with the help of doctors, nurses, and loved ones.

A brief definition and explanation of VSED

VSED is a way of dying that some people may choose when they have a terminal illness or a condition that makes their life extremely hard. Terminal illness means that a person has a disease that cannot be cured and will cause death soon. A condition that makes life hard could be something like severe dementia, stroke, or ALS. These conditions can affect people’s ability to think, speak, move, or do things they enjoy. VSED is not a suicide or a way of giving up on life. It is a way of accepting that death is near and choosing to die peacefully and comfortably.

The difference between VSED and Assisted Dying

VSED is different from assisted dying, which is also called euthanasia or physician-assisted suicide. Assisted dying means that a person asks a doctor to give them a medicine that will end their life quickly and painlessly. Assisted dying is illegal in most countries and states, and it is very controversial. Some people think that assisted dying is a human right and a compassionate choice. Other people think that assisted dying is immoral and is against the value of life. VSED is not illegal or controversial because it does not involve anyone else ending a person’s life. VSED is a natural way of dying that respects a person’s autonomy and dignity.

The legal and ethical implications of VSED

VSED is legal in most countries and states if a person is mentally capable of making their own decisions and has informed consent. Informed consent means that a person understands the benefits and risks of VSED and agrees to it without any pressure or coercion. VSED is also ethical because it does not harm anyone else or violate moral principles. VSED is based on the idea that a person has the right to decide how they want to live and die and that no one should force them to do something they do not want to do. VSED is also consistent with the goals of hospice care, which is to provide comfort and support to people who are dying and their families.

Why Do Some People Choose VSED?

People who choose VSED have varied reasons and motivations for their decision. Some may have personal, psychological, or spiritual factors influencing their choice. VSED can also have benefits and challenges for those who choose it and their loved ones.

The common reasons and motivations for choosing VSED

Some of the common reasons and motivations for choosing VSED are:

A person may feel that their quality of life is exceptionally low or that they have no hope of recovery or improvement. They may not want to prolong their suffering or depend on others for their care.
A person may have a strong preference or belief about how they want to die. They may want to have more control over their dying process or to die at home with their loved ones. They may also have religious or cultural values that support VSED.
A person may want to avoid the side effects or complications of their treatments or medications. They may not want to undergo invasive procedures or interventions that cause more harm than good. They may also want to avoid medical costs or legal issues.

The psychological and spiritual aspects of VSED

Choosing VSED can significantly impact a person’s psychological and spiritual well-being. Some of the psychological and spiritual aspects of VSED are:

A person may experience a range of emotions, such as sadness, anger, fear, guilt, or peace, when they decide to stop eating and drinking. They may also have doubts or regrets about their decision or face opposition or criticism from others. They may need emotional support and counseling to cope with their feelings and resolve conflicts or issues.
A person may feel that their decision to stop eating and drinking has meaning or purpose. They may see VSED as expressing their values or beliefs or completing their life journey. They may also have a spiritual connection or faith that helps them accept their mortality and find comfort and hope in their dying process.

The benefits and challenges of VSED

VSED can benefit and challenge those who choose it and their loved ones. Some of the benefits and challenges of VSED are:

A benefit of VSED is that it can reduce the physical pain and discomfort a person may feel from their illness or treatments. VSED can also help a person die more peacefully and naturally, without any artificial means or interventions. VSED can also give a person a sense of autonomy and dignity in their dying process.
A challenge of VSED is that it can be hard to watch a person stop eating and drinking and to see their body change and weaken. VSED can also cause some symptoms, such as dry mouth, thirst, hunger, nausea, or confusion, which may need to be managed with palliative care. VSED can also be emotionally and mentally stressful for the person who chooses it and their loved ones.

How to Support a Loved One Who Chooses VSED?

If a loved one decides to stop eating and drinking, it can be a difficult and emotional time for everyone involved. Caregivers and family members may have different feelings and opinions about VSED and may not know how to support their loved one best. Here are some tips and suggestions on how to support a loved one who chooses VSED:

The role and responsibilities of caregivers and family members

Caregivers and family members have a key role and responsibility in supporting a loved one who chooses VSED. Some of the things they can do are:

Respect and honor their loved one’s decision and wishes. They should not try to change their mind or force them to eat or drink. They should also not feel guilty or responsible for their loved one’s choice.
Communicate and cooperate with their loved one’s healthcare team. Inform them about their loved one’s decision and follow their advice and instructions. Ask questions and seek clarification if unsure or confused.
Provide physical and emotional care and comfort to their loved one. They should help them with daily needs and activities, such as bathing, dressing, or moving. They should also keep them company and talk, listen, or read to them. They should also offer them ice chips, mouth swabs, or lip balm to ease their dryness or thirst.

The medical and palliative care options for VSED patients

VSED patients may need medical and palliative care to manage their symptoms and to ensure their comfort and dignity. Some of the medical and palliative care options for VSED patients are:

Medications and treatments. VSED patients may need medications and treatments to relieve their pain, nausea, anxiety, or other discomforts. They may also need antibiotics, oxygen, or IV fluids to treat infections, breathing problems, or dehydration. These medications and treatments should be given only if they are consistent with their loved one’s wishes and goals of care.
Hospice care. Is a type of care that focuses on improving the quality of life of dying people and their families. It can be provided at home, a hospice facility, or a hospital. Hospice care can offer medical, nursing, social, spiritual, and emotional support to VSED patients and their loved ones.
Advance directives and palliative care plans. Advance directives and palliative care plans state a person’s preferences and wishes for end-of-life care. They can include a living will, a health care proxy, a do-not-resuscitate order, or a physician order for life-sustaining treatment. These documents can help VSED patients and their loved ones communicate their choices and values to their healthcare team and avoid unwanted or unnecessary interventions.

The emotional and practical support for VSED patients and their loved ones

VSED patients and their loved ones may need emotional and practical support to cope with the challenges and changes that come with VSED. Some of the emotional and practical support for VSED patients and their loved ones are:

Counseling and therapy. Counseling and therapy can help VSED patients and their loved ones deal with their feelings and thoughts about VSED. They can also help them resolve any conflicts or issues from VSED. Counseling and therapy can be provided by professionals, such as psychologists, social workers, or chaplains, or by peers, such as support groups or online communities.
Legal and financial assistance. Legal and financial assistance can help VSED patients and their loved ones with the legal and financial matters that may be affected by VSED. They can include making a will, appointing a power of attorney, applying for benefits, or paying bills. Legal and financial assistance can be provided by professionals, such as lawyers, accountants, or financial planners, or by organizations, such as legal aid, insurance companies, or government agencies.
Grief and bereavement support. Grief and bereavement support can help VSED patients and their loved ones prepare for and cope with the loss and grief that come with VSED. They can include counseling, therapy, support groups, memorial services, or rituals. Grief and bereavement support can be provided by professionals, such as counselors, therapists, or clergy, or by organizations, such as hospices, funeral homes, or churches.

What to Expect During and After VSED?

VSED is a process that can take days or weeks, depending on the person’s condition and metabolism. During and after VSED, a person and their loved ones may experience various physical and mental changes, as well as some complications and interventions. They may also go through various stages of grief and bereavement as they cope with the loss and adjustment.

The physical and mental changes that occur during VSED

During VSED, a person’s body and mind will gradually shut down as they stop taking in any food or fluids. Some of the physical and mental changes that occur during VSED are:

A person may lose weight, become weaker, and have less energy. They may also have lower blood pressure, a slower heart rate, and lower body temperature. They may need more rest and sleep and be less interested in activities or conversations.
A person may experience less pain and discomfort from their illness or treatments as their body produces natural painkillers called endorphins. They may also experience less nausea, vomiting, or constipation as their digestive system slows. They may also experience less swelling, congestion, or secretions as their body loses fluids.
A person may have symptoms, such as dry mouth, thirst, hunger, headache, or dizziness, especially in the first few days of VSED. They may also have some confusion, agitation, or hallucinations, especially in the last few days of VSED. They may also have difficulty breathing, coughing, or choking, especially near the end of VSED.
As brain function declines, a person may experience changes in consciousness, awareness, or perception. They may have vivid dreams, visions, or memories as they recall their past or prepare for their future. They may also have some spiritual experiences, such as feeling the presence of a higher power or a departed loved one, as they seek comfort and peace.

The possible complications and interventions for VSED

VSED is generally a safe and comfortable way of dying, but it can also have some complications and interventions, depending on the person’s condition and wishes. Some of the possible complications and interventions for VSED are:

A complication of VSED is dehydration, which is the body’s loss of water and electrolytes. Dehydration can cause symptoms such as dry mouth, thirst, headache, or dizziness, as well as serious problems such as kidney failure, seizures, or coma. As it affects the vital organs and systems, dehydration can also hasten the dying process.
Hydration, which provides water and electrolytes to the body, is an intervention for VSED. Hydration can be given orally by offering ice chips, mouth swabs, or sips of water or intravenously by inserting a needle or a tube into a vein. It can help relieve symptoms such as dry mouth, thirst, headache, or dizziness and prevent problems such as kidney failure, seizures, or coma. Hydration can also prolong the dying process, supporting vital organs and systems.
A complication of VSED is infection, which is the invasion of bacteria or viruses into the body. Infection can cause symptoms such as fever, chills, sore throat, and serious problems such as pneumonia, sepsis, or organ failure. It can also hasten the dying process, as it weakens the immune system and causes inflammation.
An intervention for VSED is antibiotics, which are medicines that kill or stop the growth of bacteria or viruses. Antibiotics can be given orally, by swallowing a pill or a liquid, or intravenously, by inserting a needle or a tube into a vein. Antibiotics can help relieve some symptoms, such as fever, chills, or sore throat, and prevent some problems, such as pneumonia, sepsis, or organ failure. Antibiotics can also prolong the dying process, strengthening the immune system and reducing inflammation.

The grief and bereavement process for VSED survivors

VSED survivors are the people who are left behind after a loved one dies from VSED. VSED survivors may experience grief and bereavement, which are the normal and natural reactions to loss and change. Grief and bereavement are not illnesses or disorders but processes that help people heal and grow. Grief and bereavement can vary from person to person, depending on their personality, culture, relationship, and coping skills. Some of the grief and bereavement processes for VSED survivors are:

A stage of grief and bereavement is denial, which is the refusal or inability to accept the reality or the finality of the loss. Denial can help people cope with the shock and the pain of the loss, as well as protect them from being overwhelmed by their emotions. Denial can also hinder people from moving forward and adjusting to new situations, isolating them from others who can help them.
A stage of grief and bereavement is anger, which is the expression or release of the frustration or resentment caused by the loss. Anger can help people cope with the injustice and unfairness of the loss and assert their rights and needs. However, it can also hinder people from moving forward and adjusting to new situations, alienating them from others who can help them.
A stage of grief and bereavement is bargaining, which is the attempt or hope to change or reverse the outcome of the loss. Bargaining can help people cope with the guilt and regret of the loss and seek forgiveness and reconciliation. However, it can also hinder people from moving forward and adjusting to new situations and delude them from reality and truth.
A stage of grief and bereavement is depression, which is the experience or display of the sadness or emptiness caused by the loss. Depression can help people cope with grief and the mourning of the loss, as well as acknowledge and express their feelings. Depression can also hinder people from moving forward and adjusting to a new situation, as well as impair their functioning and well-being.
A stage of grief and bereavement is acceptance, which is the recognition or realization of the permanence and the inevitability of the loss. Acceptance can help people cope with the closure and completion of the loss and find meaning and purpose in their lives. Acceptance can also help people move forward, adjust to the new situation, and reconnect with others who can help them.

Where can you find more information and resources on VSED?

If you want to learn more about VSED or find support and guidance for yourself or your loved one, many sources and resources are available. Here are some of them:

A list of reliable and reputable sources on VSED

Some of the reliable and reputable sources on VSED are:

Compassion & Choices: This national organization advocates for end-of-life choices and provides information and resources on VSED and other options.
End-of-Life Choices Oregon: This state organization helps people with end-of-life decision-making and offers consultation and support for VSED and other options.
End of Life Washington: This state organization provides education and advocacy for end-of-life choices and offers assistance and support for VSED and other options.

A list of organizations and groups that offer VSED support and advocacy

VSED Resources Northwest is an organization that offers VSED support and advocacy. This group consists of VSED advocates, palliative care professionals, and family members of those who have chosen VSED. They strive to increase community awareness of VSED and make it more accessible and available. They also provide educational resources, stories, and referrals to caregivers, death doulas, and physicians experienced with VSED.

Some of the books and articles that share VSED stories and perspectives are:

The Best Way to Say Goodbye: A Legal Peaceful Choice at the End of Life by Stanley A. Terman: This book explains the legal, medical, and ethical aspects of VSED and other end-of-life options. It also includes personal stories and testimonials from people who have chosen VSED or helped their loved ones with VSED.
Voluntarily Stopping Eating and Drinking: A Compassionate, Widely Available Option for Hastening Death by Timothy E. Quill and Ira R. Byock: This article discusses the clinical, ethical, and legal issues of VSED and other end-of-life options. It also provides practical guidance and recommendations for patients, families, and clinicians considering or involved in VSED.
Choosing to Die: A Personal Story by Phyllis Shacter: This is a book that tells the story of the author’s husband, who decided to VSED as a way of dying from Alzheimer’s disease. It also shares the author’s insights and reflections on VSED and other end-of-life choices.

Conclusion

VSED is a voluntary and legal way of dying that some people may choose when they have a terminal illness or a condition that makes their life very hard. VSED involves stopping eating and drinking by mouth, which can lead to a peaceful and natural death in days or weeks. VSED is not a suicide or a way of giving up on life, but rather a way of accepting that death is near and choosing to die with dignity and comfort.

VSED is a personal and serious decision that should be made with the help of doctors, nurses, and loved ones. VSED can have various physical, mental, emotional, and spiritual aspects that need to be considered and addressed. VSED can also have benefits and challenges for those who choose it and their loved ones.

If you or your loved one are thinking about VSED or have decided to do VSED, you may need more information and resources to help you with your choice and your process. You may also need support and guidance from professionals, organizations, and groups that are experienced and knowledgeable about VSED. You may also want to read or listen to stories and perspectives from people who have chosen VSED or helped their loved ones with VSED.

VSED is not for everyone, but it is an option that some people may find suitable and preferable for their end-of-life care. VSED is a way of supporting a loved one’s decision to die on their terms and to honor their wishes and values. VSED is also a way of supporting yourself and your family as you cope with the loss and the change. VSED is a way of saying goodbye with compassion and respect.