Living Will

Updated: Oct 13, 2018

The living Will is about the choices you make at the end of life – for yourself and others – are important. Make sure that your voice is heard and respected with regards to your wishes, values, and beliefs. Think about what you would want and start the conversation with others about your end-of-life care. The living Will has different terminology in different countries such as Personal directive, Advance directive, Advance care directive, Advance care planning, Medical directive or Healthcare directive, Healthcare advance directive, Healthcare proxy or advance decisions. We will use a word "Living Will" and "Proxy" instead of other names in our discussion.



What are the important definitions do I need to know about Living Will?


Living Will

A living will is a legal document that takes effect only when you are incapacitated and can no longer express your wishes. A living will have the purpose of communicating your desires for health care decisions when you are mentally incapable. A living will is a document in securing your values, beliefs and religious wishes that provides direction to your family members, relatives regarding your decisions for end of life or sickness care such as irreversible coma or terminal illness like situations, should you become mentally incapable. In an unfortunate situation, your family members, relatives or physician follow the instructions concerning medical needs such as whether you want artificial respiration, pain medications, hydration withheld, medical procedures, etc.


Other names of Living Will

Living wills are sometimes referred to by other names, such as an advance directive for health care, a power of attorney for health care, a declaration for medical treatment, health care proxy or advance decision.


Advance Care Planning (ACP)

The process of preparing for likely scenarios near the end of life that usually includes assessment of, and dialogue about, a person’s understanding of their medical history and condition, values, preferences, and personal and family resources.


Advance Care Directive (ACD)

A document that describes one’s future preferences for medical treatment in anticipation of a time when one is unable to express those preferences because of illness or injury. Advance Care Directive is the name of living Will.


Jurisdiction

State, province or territory of the respective country.


Mentally capable

It is a state a person can understand the information and be able to communicate that is relevant to the making of a personal decision and the ability to appreciate the reasonably foreseeable consequences of the decision.


Personal matter

It may include the range of terms such as healthcare, accommodation, with whom the person may live and associate, participate in social, educational, religious, cultural and employment activities, legal matters or any other matter prescribed by the regulations.


Maker

A person who makes a Living Will.


Proxy

A person named in a living Will to make decisions when the person making the Will can not make or communicate decisions. There are different names of Proxies such as an Agent, Guardian, Representative, etc.


Substitute or Alternate

A person who is authorized to decide on behalf of a person who can not make or communicate his or her own decision.


Monitor

A person who may be appointed in a representation agreement to ensure the representative carries out his/her duties.


Comfort care

The care that will keep you comfortable and manage your pain, but will not cure your illness.


Palliative care

It has traditionally viewed as special medical care provided during the last few months, weeks or days of a person's life. In reality, however, most

people die unexpectedly, not within a defined timeframe, and often without

having been identified as a palliative. For these reasons, current best practice is for providing a palliative approach to care to begin earlier within person’s journey with an illness.


Anatomical gift

It refers to the donation of an individual's body organs to medical science after death which provides an opportunity for future health professionals to study human anatomy and develop an appreciation of the form, function, and beauty of the human body. It may also include, allowing one's organs to be removed immediately after death for medical purposes, usually for transplant into another ill person. For instance, your wishing to donate eyes, kidneys, etc. after death. Making anatomical gift is your personal choice, and no country law forces you to do that.


Allow Natural death

It is a medical term defining the use of life-extending measures such as cardiopulmonary resuscitation (CPR). These orders emphasize patient comfort and pain management instead of life extension.


Personal care

It refers to the daily living needs of individuals, such as living arrangements, diet, clothing, hygiene, exercise, and safety.


Life support and life-prolonging medical interventions

These are healthcare treatments like tube feedings, ventilators (breathing machines), kidney dialysis, medications, and cardiopulmonary resuscitation.


Treatment

It is a medical procedure to be carried out by a healthcare practitioner to cure sickness.


Psychosurgery

Any procedure that, by direct or indirect access to the brain, removes, destroys or interrupts the continuity of histologically normal brain tissue, or that inserts indwelling electrodes for pulsed electrical stimulation to alter behavior or to treat psychiatric illness. However, it does not include neurological procedures used to diagnose or treat intractable physical pain or epilepsy where those conditions are demonstrable.


Cardiopulmonary resuscitation (CPR )

It is an emergency procedure used to revive someone when their heart and lungs stop working unexpectedly.


Comatose or Comma

It is a medical condition profound or deep state of unconsciousness where there is no reasonable expectation of regaining consciousness. In such a state, a patient is alive but not being able to react or respond to life around us and we are not expected to awaken from that comatose condition.


Dialysis

It is a medical procedure that cleans your blood when your kidneys can no longer do so.


Feeding tube

It is a way to feed someone who can no longer swallow food. It is a small plastic tube that carries liquid food, which is inserted through the nose or directly into the stomach or intestines.


Intensive care unit (ICU)

It is a unit in a hospital where people are kept alive using machines (such as a breathing machine or ventilator) and proper intravenous medications to support the heart.


Intravenous line (IV )

It is a way to give a person fluids or medicine. A hollow needle, attached to a narrow tube, is placed in a vein in the hand, arm or another location.


Tracheostomy

It is a surgical procedure to create an opening into your windpipe

through your neck.


Transfusion

It is when a person is given blood or blood products through an intravenous line.


Ventilator

It is a machine attached to a tube that is placed down the windpipe helping people when they can not breathe on their own.


Autopsy

It is also called as a post-mortem examination, obduction, necropsy, or autopsia cadaverum and is a highly specialized surgical procedure that consists of a thorough review of the dead body by dissection to determine the cause and manner of death or to evaluate any disease or injury that may be present for research or educational purpose.



How the advance care planning in UK differs compare to other countries of the world?


An advance statement, advance decision or advance directive are the standard term used in the UK, instead of living Will. There are different interpretations of these terms when it comes to different jurisdictions England, Walse, Scotland, Northern Ireland & Republic of Ireland. The advance directive is a Scottish term, but in other parts of the UK, these documents are popular as Advance Decisions. The advance directive is not legally binding in Scotland while Advance decision and ADRT are legally binding in England and Wales while Advance statement is not.


Advance decision

Advance Decisions are a part of advance care planning and are a generic term to describe an individual’s process of planning/decision-making for the future when they can do so, to prepare for a time when they may lack the capacity to make these decisions for themselves. There are potential risks to be considered by those who sign an advance decision. An advance decision only needs to be in writing if you want to refuse "life-sustaining" treatments and it will be legally valid if it is in written form.


Advance statement

An advance statement term is applicable for residents of the UK which allows you to make general comments, describing your wishes and preferences about future care should you be unable to make or communicate a decision or express your choices at the time. You may want it to reflect religious or other beliefs and essential aspects of your life. You can include things such as food and drink preferences; type of clothes you like to wear; music, TV or DVD preferences, or whether you want a bath or a shower. An advance statement is not legally binding, but those making a ‘best interests’ decision on your behalf should take its contents into account when you cannot tell them what you would like.


Advance decision to refuse treatment (ADRT)

The ADRT is applicable for residents of the UK which to refuse treatment, and it is written and signed by Maker, proxy, and witnesses. It comes into effect if a maker loses mental capacity and cannot consent to or refuse treatment.


Mental capacity act (MCA)

The MCA is applicable for residents of the UK which aims to empower and protect people who cannot make decisions for themselves by providing a legal framework and process to follow when making ‘best interests’ decisions on their behalf. MCA a refers to "Advance decisions." Advance decisions to refuse treatment that is both valid and applicable under the requirements of the Mental Capacity Act will be legally binding for everyone involved in the care of the individual.


Lasting powers of attorney (LPA)

The Mental capacity act introduced the system of Lasting powers of attorney (LPA) which replaced the previous Enduring powers of attorney. You can make LPA for financial decisions (which is equivalent to "Power of Attorney" in general term) and LPA for health and care decisions (which is equivalent to "Living Will" in general term). If you have or intend to have, an advance decision to refuse treatment and LPA for health and care decisions, it is essential to consider their inter-relationship.



What are the truths about our life?

Truths are always difficult but that's the reality of our life

  1. We do not know when my last breath before I want to accomplish my many life dreams.

  2. We do not know when I may face accidents and turn life into the condition of disability. It is as simple as someone goes to buy a coffee and end up admitting to the hospital.

  3. We do not know about our supporters, loved one, relatives, friends shall be around to look after my wishes, values, and beliefs because we are in the same boat of life journey.

  4. Even though we have medical technology on the verge of a peak, still we are immune to many deceases and illnesses.



What is the aim of Living Will?


The aim is to respect the human dignity by providing care that is clinically indicated and ethically appropriate and seeks to understand patient values regarding care provision through the wishes outlined in the document.



Why should you have Living Will?


If you do not have a Living Will in place and you lose mental capacity in the future, a family member or friend may apply to the court for an order of guardianship which is a costly and time-consuming procedure. The health care decisions may delay until court order can appoint a Proxy. The person designated as your Proxy may not be the person whom you would like or wanted to make decisions for you. Additionally, depending on how you have your financial affairs set up, mental incapacity could make it virtually impossible for your family or friends to deal with the simplest of tasks such as paying a bill.


If you have an accident or become ill, and lose your capacity to give instructions, then these documents become crucial.


You might be in an irreversible coma, or maybe you're suffering from a terminal illness. You're no longer lucid, and you can no longer express the steps you want taken to preserve—or not to keep—your life. Do you want your heart resuscitated if it stops? Would you instead not be placed on a ventilator even if it means saving your life? All these decisions are essential which your living Will would answer.


A living will is specifically designed to deal with how you feel about life-ending versus life-sustaining procedures. It can also address issues of palliative care and organ donation. It allows you to express your wishes in advance at a time when you are still far from sickness, and you're thinking clearly.



What are the main categories cover in Living Will?


There are three areas Personal care, Health conditions and non-financial you may include in your living will.


Personal care

Personal care may include Cloths, comfort care or measures, continuing care, nutrition, shelter, and daily needs (meals, laundry, dressing, mobility, etc.).


Health conditions

Health conditions may include stroke, Dementia, permanent comma or other terminal illnesses, allow natural death, antibiotics, blood transfusions, chemotherapy, Intravenous therapy (IV), intubation, Kidney dialysis, life support with medical interventions, palliative care, radiation, resuscitation, tube feeding and surgery.


Non-financial

Non-financial legal matters will include information such as giving consent for the release of your medical records etc.


What are the typical question, you should ask for creating your Living Will?


We live life with pleasure, enjoyment and great health but the situation may change without notice, and it is sometimes depressing to think about our death, end of life care and so on.

  1. How would I like to spend time with my family, relatives or friends near my end of life?

  2. How am I going to live my end of life with my hobbies of loving to art, gardening, work, fresh air, sports or specific set up in my room I want?

  3. How would I be able to uphold my values and beliefs about practicing faith, doing worship, spiritual rituals or readings, enjoy looking at nature, staying at home or caregivers or any creative activities near the end of life?

  4. How shall I have comfort in believing there is something after death, even if I don't know it?

  5. How would I like to be treated when I struggle to breathe, have unbearable pain, etc.?

  6. Do I have a memory of a loved one who has died, what did I learn from their experience?

  7. How would I like to be treated in case of medical and surgical treatment required in a situation like terminal illness or unable to speak for myself due to impacting my memory?

  8. What worry do I have for approaching death?

  9. How would I be able taken care if nobody is available to be taken care of me?

  10. Would I want life support or life-prolonging medical interventions if it means I could no longer enjoy my life and activities the same way I do now?

  11. How am going to be treated with pain, anxiety, dizziness, nausea, bleeding, infection or terminal illness or comma like situations?

  12. -How would I like to be cared in case of medical interventions such as a ventilator to help with breathing, tube feeding, kidney dialysis or cardiopulmonary resuscitation to restart the heart and lungs?

  13. How shall I have wishes respected about holding my hand by my relatives or friends, religious leader to visit me?



What information should you include in Living Will?


The living will do not represent paperwork formality but a process in which you may include a variety of things such as

  1. Where do you prefer to die? At your home, hospital or long-term care.

  2. What medical interventions (e.g., resuscitation or feeding tubes) do you prefer to have it? Some individuals want to prolong life as long as possible using medical interventions. Others would not want to be hooked up to machines at the end of life if there is no chance of recovery.

  3. What would be meaningful for me at the time of my death (e.g., family/friends nearby, music playing or pictures)?

  4. Who will be making medical decisions on my behalf when I am unable to take decision my self, i.e., who will be your Proxy? The laws in regards to choosing proxy differ from state to state, province to province and so, review the directive act for choosing your proxy, agent, delegate or guardian.



What information you should not include in your Living Will?

It is common sense to keep in mind legality and feasibility for the things you may include in your Living Will.

  1. Asking for anything which is illegal and against the local or national jurisdictions legislation in regards to health care.

  2. Refuse the offer of food and drink by mouth or refuse primary care that attends to your comfort, pain or personal hygiene because these things are a fundamental human right that no one can decline in advance.

  3. Demand for specific treatments which are not prescribed by the Doctor. All medical treatment related decision will come from medical practitioner providing your healthcare. Then you decide whether or not you want that treatment.




When should I create Living Will?


We are all healthy, happy and enjoying our life. However, we do not know what happens next about our medical conditions and that's why it is wise to create a living will as soon as you are an adult (or mature minor, subject to state or provincial or territorial legislation).


Many jurisdictions need to have valid living Will to be in place before carrying out the end of life care. Living Will gives people an opportunity to secure wishes, values, and beliefs. One may have during the end of life stage.


You should think about creating your Will as soon as you may have medical conditions such as pain, dizziness, anxiety, etc. Also, when you are going under treatment of dialysis, feeding tube, tracheostomy, transfusion, ventilator, the intravenous line (IV) or you are in intensive care unit (ICU) or before going to minor or major surgeries, before it becomes too late and should you become mentally incapable.



Who can create Living Will?


An adult (or mature minor, subject to state or provincial or territorial legislation) or by Proxy who is your spouse, relative, a friend who is capable of understanding written information. The appointed Proxy should know you well, be willing and able to make complex decisions on your behalf and be able to be contacted.


When does Living Will become important?


In critical health care situations such as you do not recognize you're loved once, relatives or friends and, Doctors feel that you are very close to death and so, this is the time when you want to be kept alive using machines? Does anyone know your wish? And Is anyone appointed to take decisions on your behalf in regards to your care and treatment?. All these may happen when a patient is in a comma, terminal illness or Alzheimer kind of



How can you secure religious wishes in your Living Will?


The living will is the document which expresses our wishes about the medical care you may prefer to take in case of terminal illness. You have the freedom to pick and choose what you want and do not want and that way you may secure your moral or religious wishes. In many of the religions, it is not allowed to turning off treatment (similarly if you have the fever and not taking medicine for curing your self) and let a patient die. The decision about advance healthcare planning is the very personal choice of an individual, and no one stops you expressing your wishes as for how would you like to be taken care in a comma or terminal illness kind of situation. In summary, please keep in mind to have thinking and conversation about following points while creating your living Will.

  1. Is religious or spirituality important for me?

  2. What is my belief in regards to allowing the "removing treatment" and allowing natural death?

  3. What are my funeral or burial wishes?

  4. Would I let an autopsy (post-mortem examination, obduction, necropsy, or autopsia cadaverum) on my body religious point of view?

  5. Would I prefer to donate my organs after death?



What is Proxy?


The proxy is the person or people who will provide consent or refusal of permission for care and treatments for you if you are not mentally capable of doing so for yourself. There is the variations in the name used instead of proxy are an Agent, Guardian, Alternate decision maker, Substitute decision maker, delegate, Surrogate, Durable health care power of attorney, Patient advocate, etc.



Who can and cannot be your Proxy?


The person who is your doctor, an employee of a health care provider can not represent for your Proxy. The person may be a health care professional if they are a friend or family member not involved in your care. Consider the following criteria in selecting your proxy.

  1. A person who is an adult (or mature minor, subject to state or provincial or territorial legislation).

  2. A person who can communicate, make decisions and ask questions to physicians and other responsible for your Will.

  3. A person who is willing and agrees to carry out your affairs with respecting your wishes, values, and beliefs.

  4. A person one whom do you have trust in and knows you well.

  5. A person who can put your interests before their own.



What is difference between Proxy and decision maker?


The proxy can be responsible for making all decisions. However, you can have more than one decision maker for different kind of decisions. For instance, you may appoint spouse for deciding on health care, you may designate your brother for making decisions on personal care, or you may instruct your Proxy to consult your family members or friends for making decisions.



Can I be able to appoint more than one Proxy?


It is better to appoint more than one Proxy, in case if the first Proxy may not be able to act then the second Proxy (substitute or alternate) can perform for carrying out wishes.



What happens if I do not have a Proxy in general?


If you do not have a Proxy, then government appoints Proxy for deciding on your behalf. There is specific legislation for selecting Proxy and so, consult state, provincial or territorial act or law which may include relative from the hierarchy (legal guardian, spouse, child, parent, siblings, grandparent, aunt, uncle, niece, nephew, other relatives or public trustee etc.) outlined in the law that will be asked to make decisions for you. They must make decisions based on knowledge of your wishes, values or verbal instructions. If they do not know your preferences, they must base the decisions on your best interest. So it is essential to have a conversation with your loved ones or friends whom you trust about your end of life wishes, values, and beliefs.



Who else other than Proxy, should I know about my wishes?


Your family physician or doctor, other healthcare professionals involved in your care, your lawyer, and other family members or friends should know about your wishes, values, and beliefs. Let your doctor know who you have appointed to be your future Proxy and this will be helpful if you do not have a Proxy named and should happen you to be mentally incapable then above mentioned personal can speak to your future Proxy.



What if, I do not wish to appoint Proxy?


If you do not wish to name anyone to make decisions for you, but want to set out specific instructions for health care providers to use, you can write down the instructions and talk to your healthcare providers. However, it is complicated to write instructions that are specific to every situation. If your instructions are unclear or not applicable to a particular case, then your healthcare providers would turn to your Decision Maker.



What happens if I do not have Living Will?


If you do not have any written instructions, your Proxy must make a decision they believe you would have wanted based on what they know about your values and beliefs and any other wishes. If your Proxy does not do what you have wanted, they must act in your best interest. Laws about last will differs from one jurisdiction to another. In some jurisdictions, you must have the "Living Will" created, dated and signed by a witness as well as the "Declaration of Incapacity" form completed before your wishes to be carried out.



When Living Will comes into effect and When can I be able to change it?


Remember, the living Will would come into effect only if you are not capable of speaking for yourself. You can also change it at any time as long as you are mentally competent, if not then the last version of a living will be in effect and speak about your wishes.



Who can not be Witness in my Living Will?


Following persons can not witness the living Will.

  1. A person who is the maker and owner of the living Will.

  2. A person designated as a Proxy.

  3. The spouse named as a Proxy.

  4. A person who signs the living Will on behalf of the maker.

  5. The spouse who signs the living Will on behalf of the maker.



What is valid or legal Living Will?


You do not need a lawyer or notary to create your living will, however, do review respective state or provincial or territorial law for creating your living, Will.

  1. You and witnesses must be an adult (or mature minor, subject to state or provincial or territorial legislation).

  2. A living will have to be dated, signed by the person making it in the presence of two or more witnesses and your witness signs it.

  3. If you are physically unable to sign but are mentally capable, another person can sign for you in the presence of both you and the witnesses.


Where do I keep the signed copy of my Living Will?


Scan and send the electronic copy via email to your spouse, trusted family members, friends, proxy, a family physician, lawyer or other people who will be providing care for you. Keep the original copy at home, lawyers office or bank safety deposit box. If you are in the continuing care kind of situation, then take a copy with you. If you travel, keep a copy with you as a majority of world countries respect your living will wish, values and beliefs in an unfortunate situation should happen.



What should I do if I want to change or cancel my Living Will?


Before changing or canceling your living Will, be sure you have up to date knowledge

about your current health condition and the plan for the new health care treatments available to you. Your circumstances change over time, and you may change or cancel or revoke your living Will anytime as long as you are mentally capable. If you want to change or cancel (revoke), your living will, you should destroy all copies of the old living will to avoid any confusion and make a new one. It is not required. However, you can also declare your intention to cancel your living will in writing, signed and witnessed. It is important to regularly review and make changes to your living Will when you believe it is necessary.



What happens if I could not be able to communicate my wishes about end of life care?


If it is an emergency situation and time is a concern, the health care providers will proceed with providing treatment. To avoid this situation, you may want to have a card in your wallet indicating you have a living will and that you have named a Proxy, and include his/her contact information.



What is an advance care planning?


You may never need your advance care plan – but if you do, you will be glad that you have had these conversations. It is a way to make sure that your voice is there when you cannot speak for yourself.


An Advance Care Plan is more than a document outlining your wishes for care at the end of life. Advance Care Planning is a process of reflection and communication. It is a time for you to reflect on your values and wishes, and to let others know what kind of health and personal care you would want in the future if you become incapable of consenting to or refusing treatment or other consideration.


It means thinking about what is important to you and what you value. Having these conversations and making a plan are ways to give your delegates the confidence to make decisions on your behalf. It is how we care for each other.


The advance care planning is another name for management of living will. The term is popular in Canada and used to guide health care professionals, patients and alternate decision-makers regarding the general intentions of clinically indicated health care, specific interventions, and the service locations where such care will be provided. It also guides healthcare professionals to assist in rapid decision-making in the

clinical environment. These conversations allow for a respectful understanding of patient’s wishes concerning general care focus as well as initiation, continuation, and limits of specific interventions. This process will include communication between health care professionals, patients and when appropriate, alternate decision-makers. Once a Goals of Care Designation conversation has been held, and if clinically indicated, a Goals of Care Designation order shall be created by the most responsible health practitioner and documented in the Advance Care Planning/Goals of Care Designation Tracking Record. Reviewing, validating or altering a Goals of Care Designation order occurs when the new circumstances or health issue arise, the location of care changes, the patient or alternate decision maker requests or have a disagreement with the designation.



Where can I find information about creating my living Will?


The concept of Living Will have been becoming familiar in the last few decades, and due to having access to the internet, the majority of jurisdictions have the templates available via online websites. There are three ways to find the template by searching keywords Living will, Personal directive, Advance directive, Advance care directive, Advance care planning, Medical directive or Healthcare directive, Healthcare advance directive or advance decisions on following

1. Visit and search on State, Provincial or Territorial or countrywide government websites.

2. Visit and search on local public or private hospital website.

3. Visit and explore local and national associations.



We have done our due diligence to provide the readers with accurate information. However, liability lies with readers. The laws with regards to a living will differ from one jurisdiction to another, and so please consult the respective jurisdiction's website before making a decision.

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