Glossary of Terms

 

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 A


Advanced Directive

There are three different forms of legal documents that are loosely termed “Advance Directives,” 1) Do Not Resuscitate orders, 2) Living Wills and, 3) Durable Power of Attorney for Healthcare. Laws and documents regarding these Advance Directives vary among states. Click here to view advance directives for your state.

 

Agitation

A state of extreme restless with or without confusion, which may occur for some near the end of life. Hospice and palliative care specialists may manage this by reducing some medications or by adding others, such as tranquilizers. Rarely, extreme agitation may require 24 hour hospice care, sometimes necessitating an admission to the hospital for adequate symptom control.

 

Allow Natural Death (AND orders)

Allow Natural Death (AND) orders have been proposed as an alternative to traditional Do Not Resuscitate (DNR) orders. While a DNR simply states that no attempts should be made to restart breathing or restart the heart if it stops, an Allow Natural Death (AND) order would ensure that only comfort measures are taken. This would include withholding or discontinuing resuscitation, artificial feedings, fluids, and other measures that would prolong a natural death. Allow Natural Death orders are intended for terminally ill patients only.

Allowing a natural death simply means not interfering with the natural dying process while providing care directed at keeping the patient as comfortable as possible

(definition from , About.com, Death and Dying, Updated April 14, 2010)

 

Anticipatory Grief

Grieving the loss of a loved one before their actual death occurs. If you are a care taker, anticipatory grief is compounded by your ongoing responsibilities in caring for the one who is in their end-of-life period. Care takers experiencing anticipatory grief should make time for themselves- for rest, physical activity and involvement in positive emotional activities to create balance. Anticipatory grief is different than post-death grief which is referred to as bereavement, although all grieving may share common traits. See Grief.

 

Artificial Hydration

Receiving fluids in any way other than by drinking through the mouth. Artificial hydration is typically administered through an IV line. You should choose ahead of time, under what conditions you would want or not want artificial hydration.  Details of these wishes should be documented in your living will, Personal Self-Assessment Scale (PSAS) click here to download, or POLST click here for sample. See also Dehydration.

 

Artificial Life Support

Medical treatments and therapies used to maintain life after the failure of one or more vital organs (example: artificial ventilator or breathing machine). You should decide ahead of time, under what conditions you would want or not want artificial life support. Details of these wishes should be documented in your living will, Personal Self-Assessment Scale (PSAS) click here to download, or POLST/ state DNR documents, click here for samples.

 

Artificial Nutrition

Receiving nutrition in any way other than by feeding or drinking through the mouth. Artificial nutrition can be administered through a nasogastric tube (NG tube), a gastrostomy tube (G tube or PEG tube), or through an IV line (total parenteral nutrition, TPN). You should choose ahead of time, under what conditions you would want or not want artificial nutrition. Details of these wishes should be documented in your living will, Personal Self-Assessment Scale (PSAS) click here to download, or POLST form, click here for sample.

 

Attending Physician

The doctor who is primarily in charge of your medical care while you are hospitalized or in a skilled nursing facility. This doctor should be given a copy of all of your advance directives and be willing to explain all of your treatment options in detail ranging from full life support measures to medicines that provide comfort only. This doctor will likely ask you or your surrogate medical decision-maker for your wishes regarding end-of-life medical care and this will be documented in your medical record so that your decisions may be honored.

 

Authorized Agent

An authorized agent is the person who is designated to handle the affairs or make decisions for another person. Other designations may apply such as Proxy, Executor, Decision Maker, Trust Manager, etc.

 

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 B


Baby Boomers

The largest generation in American history, the first of whom began to enter their senior years in 2011.  We here at OKtoDie suggest two effects that the Baby Boomers will have on American beliefs and practices regarding the end of life in the coming years: 1- Responsible for the "natural birth movement," the Baby Boomers will also push for a "natural death movement" increasing emphasis on palliative care and hospice services. 2- The sheer numbers of Baby Boomers facing end-of-life issues will pressure the American Medical System to change and accommodate in an accelerated fashion, or fail.

 

Bankruptcy

The #1 reason for bankruptcy in America is due to medical bills for failing health. Harvard researchers say 62% of all personal bankruptcies in the U.S. in 2007 were caused by health problems—and 78% of those filers had insurance. Click here for links to our recommended disability insurance.

 

Benefactor

 

 

Bereavement

Grieving for loved-ones following their death is termed bereavement. This is a natural and normal grief response, that may be experienced in different ways by all who experience the death of someone whom they love. Grief of any kind has common characteristics. See Grief for more details.

 

Brain Damage

Injury to the brain which may occur in a variety of conditions including direct trauma from a head injury or from decreased blood flow during cardiac arrest or prolonged CPR. (See cardiac arrest).  Over half of people resuscitated from cardiac arrest have some type of permanent brain damage. The effects of brain damage range from very mild such as changes in personality, to the devastating, in which the person is brain dead and would be dependent on life support for the other organs to survive.

 

Brain Death

An official definition of brain death is when all of the brain's functions have irreversibly ceased. Only with the advances of modern technology have we created conditions in which the brain of an individual might be dead even while the heart continues to beat and the lungs are inflated and deflated by an artificial respirator. This can be very confusing for loved ones of the "brain dead" because we naturally think of others as a "whole" and do not intuitively understand that they can be dead even if some organs continue to function. See Death for further discussion.

 

Byock, Dr. Ira   Long time palliative care physician and advocate for improved end-of-life care, and a past president of the American Academy of Hospice and Palliative Medicine, provides written resources, as well as organizations, web sites and books to empower persons with life threatening illness and their families to live fully. Author of "Dying Well,"  "A Few Months to Life: Different Paths to Life's End,"  "Palliative and End-Of-Life Pearls,"  "The Four Things That Matter Most." His new book "The Best Care Possible" is due to be released in March 2012. See his websitedyingwell.com

 

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 C


 

Capacity-  see decision making capacity

 

Cardiac Arrest

When the heart stops beating. The heart can stop beating for multiple reasons including: an abnormal rhythm, severe illness, heart attack, trauma or simply the effects of terminal illness or very old age. You should know ahead of time under what circumstances you would want or not want to receive Cardiopulmonary Resuscitation (CPR) in an attempt to get your heart restarted. CPR includes chest compressions at a minimum, but other resuscitation techniques include artificial ventilation (using a device to breathe for you) and electrical shocks delivered to your heart, if indicated. Very few people are revived from cardiac arrest and half of those whose hearts are restarted have some type of long term brain damage. You should uses the PSAS in your living will to make it clear to your family and healthcare provider about your future wishes regarding attempting resuscitation should your heart stop beating. If you do not want the above listed resusitation measures, your doctor would need to write a Do Not Resuscitate (or Allow Natural Death) order for you on a form approved by your state.

 

Cardiopulmonary Arrest

When both the heart and lungs have failed. See cardiac arrest  or respiratory arrest.

 

Care Plan

A general plan of care that should be based on the goals for quality of life identified by the person who is the recipient of care or by that person's designated surrogate decision maker.  See Goals of Care

 

Casket

A casket or coffin is the container that holds the remains(body)  of the deceased person. It may be constructed out of wood or metal. They vary in price significantly. They may be purchased directly on the internet and shipped to any funeral home or mortuary.

 

Cemetary

A cemetary or graveyard is a place where the remains of the deceased are interned.  The remains may be buried below ground, or placed in vaults above ground.  Cemetaries are usually designed to accomodate containers holding cremated remains as well.

 

Central Line

A large IV line that is placed into a large vein in the neck, under the collar bone or in the groin for multiple uses including: frequent blood draws, multiple simultaneous IV medications, and longer term need for IV access.

 

Chaplain

A valuable member of the hospital, palliative care or hospice team who provides spiritual counseling and support for those persons and their families/loved ones who are facing the end-of-life. 

 

Chest Compressions

The main component of CPR (Cardiopulmonary Resuscitation). In an adult, rapid and deep chest compressions at a rate of 100 per minute are neccessary for effective CPR. If you are elderly or very frail, chest compressions could result in multiple rib fractures, crushing the chest wall. The only people who WILL NOT receive chest compressions should they be found unresponsive and without a pulse are those who have a legal official state DNR form (indicating Do Not Resuscitate or Allow Natural Death status) or a POLST form indicating No CPR.

 

Closure

A feeling of completion or a sense of contentment experienced after resolution. A sense of closure is desirable when living in the end-of-life period. Indeed, one of the gifts of end-of-life might be the ability to obtain closure more easily than at other times of life. An emotional "window of opportunity" opens wide at this time in conjunction with a sense of perspective on ones life. This combination allows for the resolution of old conflicts, the removal of former barriers and the completion of unfinished business. See the term estranged for related information.

 

Code

The common term for delivering advanced resuscitation including CPR, electrical shocks and artificial breathing to someone who's heart has stopped or who has stopped breathing- meaning someone who is dead or dying. In the health care profession we call this "coding a patient" or "running a code." If you are in a healthcare environment you may hear overhead annoucements such as "Code Blue Room XXX" to direct medical personel to the patient who is in cardiopulmonary arrest.  If you or someone you love is hospitalized and death occurs, and if you do not have a written Do Not Resuscitate order in your chart signed by your physician, then a "code will be called" and the advanced resuscitation techniques described above will be delivered by a room full of medical professions. If you have a Do Not Resuscitate order in your chart and your heart stops or you stop breathing, such a "code" will not be called. Instead, your family will be called to your bedside and your doctor will pronouce your time of death.

 

Coma

"Coma, from the Greek word 'koma,' meaning deep sleep, is a state of extreme unresponsiveness, in which an individual exhibits no voluntary movement or behavior. Furthermore, in a deep coma, even painful stimuli (actions which, when performed on a healthy individual, result in reactions) are unable to affect any response, and normal reflexes may be lost" 1 "Persons in a coma may still hear what is said even when they no longer respond. Caregivers, family, and physicians should always act as if the dying person is aware of what is going on and is able to hear and understand voices. In fact, hearing is one of the last senses to lapse before death."2  For this reason, when a dying person enters a coma or is comatose, you are encouraged to speak words of thanks, forgiveness, love and release, even to the very end. ( 1 thefreedictionary.com).  ( 2 From Signs of Approaching Death. William Lamers, M.D. former Medical Consultant, Hospice Foundation of America. www.hospicefoundation.org)

 

Comfort Care or Comfort Focused Medicine

Medical care and therapies delivered with the intention of providing comfort, pain control, and relief of symptoms. These therapies are not intended to fight or cure the disease state or to delay death.

 

Conscientious Objector

A Physician who morally objects to carrying out a medical procedure or course of care due to his or her belief that such a course is morally wrong ( example: terminal sedation) or that such a course is futile and is producing and prolonging suffering in his or her patient (example: placing a breathing tube in a 90 year old bed-bound advanced dementia patient for artificial life support). If such situations arise and cannot be worked out, the physician's responsibility is to transfer care to another facility or physician who is willing to perform the procedure if it is a medically acceptable goal of care.

 

CPR (Cardiopulmonary Resuscitation)- see cardiac arrest

 

Cremation

 

Cremation Container

 

Cremains

 

Cryogenics

 

Crypt

 

Cure Focused Medicine

Medical care and therapies delivered with the intention to cure or fight a disease state, or to delay death.

 

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 D


Death

Death comes to us all. Officially, death occurs when either: 1) the heart and lung functions irreversibly cease, or 2) the brain has irreversibly lost all function (brain death). Today, through technological advances, in many cases medicine is able to prolong the dying process and delay death itself. Artificial life support, in some cases, is no more than artificial death extension and may not best serve the goals of the person who is dying nor their families and loved ones.

 

Death Benefit

 

Death Certificate

Official legal document signed by a physician indicating the time and cause of death. The death certificate is often required to close out many accounts and to settle the estate of the deceased loved one.

 

Death Notice

 

Death "Rattle"

A common term used to describe the typical sounds of increasing congestion and secretions that can be heard in the throat and airway of the one who is dying. Minimizing fluid intake and special medication patches are available to decrease the secretions causing this sound. Hospice professionals are experts at managing this condition and all others associated with the course of dying.

 

Deceased

A more formal term used to describe someone who is dead.

 

Decision Making Capacity

If you are the designated surrogate medical decision-maker for someone you love, you may become the active medical decision-maker, should the physician feel that the person lacks capacity to make decisions for himself or herself. The doctor may generally make the determination to use a surrogate decision-maker should the answers to any of the following questions be “No,” indicating that the person in question no longer has decision making capacity.

  • Can the person choose and communicate a choice?

  • Does the person understand the risks, benefits, alternatives, and consequences of the decision?

  • Is the person able to reason and provide logical explanations for the decision?

  • Is this decision consistent with the person’s value system, if known?

(Chow, et al. Chest, Feb 2010, Vol 137. CURVES: a mnemonic for determining medical decision-making capacity and providing emergency treatment in the acute setting)

  

Decision Regret

A substantial proportion of family members and surrogate medical decision-makers struggle with negative emotional burdens, such as guilt and depression, that may last for months, or even years, after an end-of-life decision was made, especially if no direction was left by the one who was dying.  This is known as decision regret. In contrast, surrogate decision-makers who are able to know which treatments are consistent with the wishes of their loved one are able to feel comfort in their decisions. These decision-makers are more likely to feel that they are supporting the dying person in fulfilling their end-of-life wishes. This is why it is imperative that we discuss and leave written detailed decisions as a guide for our families such as the PSAS (click here) or that we use helpful decision-making tools when we are faced with making end-of-life decisions for others, such as Fierro's Four R's: A Tool for Surrogate Medical Decision-Makers (click here).

 

Decomposition

 

Defibrillation

The use of an electronic device to send an electric shock to the heart in the event that the heart has developed certain non-life sustaining rhythms that will quickly lead to death. For every minute that the heart is in a non-sustaining life rhythm the chances of resuscitation decrease by 10%. There are two types of defibrillation devices, one which is surgically inserted beneath the skin is commonly referred to as an Automatic Implantable Cardioverter-Defibrillator (AICD). An AICD, as with any form of life-sustaining treatments, may be withheld or withdrawn (deactivated) if electrical shocks to restart the heart are not part of the patient's goals of care. The second type of defibrillation devices is applied externally using pads. This type of device is used when health care professionals are performing advanced resuscitation techniques including CPR. If you do not desire debrillation, then you must have a Do Not Resuscitate order signed by your physician. See also Pacemaker/Defibrillator

 

Dehydration

A decreased of fluids within the body. While this is an abnormal state for most, this is a normal process that occurs when we are dying. People generally do not die because they are not eating or drinking, they generally stop eating and drinking because they are dying.  It is understood that the dehydration that occurs near the end-of-life actually creates chemical changes within the body which promote comfort. Therefore, treating dehydration at the end of life may not be helpful in giving comfort, it may in fact cause or worsen: swelling (edema) or shortness of breath. If a person is unable or unwilling to eat or drink, artificial hydration using IVs or artificial nutrition using feeding tubes may be offered. You should make it very clear in your living will and PSAS under what conditions you would like to accept or forgo artificial hydration or nutrition.

 

Dementia

Dementia is a group of symptoms with many causes which lead to general decline in mental functioning to the point that dementia may be a cause of death. Extensive research has been conducted on dementia and end-of-life choices. Three of the most important findings are :1- Feeding tubes have not been shown to improve quality of life or increase life spans in persons with advanced dementia .2- Few advanced dementia patients survive CPR and most of those who do, die within 24 hours in an ICU. Thus, CPR is discouraged for these people and they should have Do Not Resuscitate orders in place. 3- Most hospitalizations do not benefit people with advanced dementia, even those with infections fare better when treated in long-term care facilities such as nursing homes. (Adapted from Alzheimer's Association: End-of-Life Care for People with Dementia in Residential Care Settings, Volicer L. 2005)

 

Depression

A commonly recognized stage of grief  which is often characterized by intense sadness, a profound sense of loss, as well as some degree of social withdrawal. No one can be pushed out of this stage, but for some medical help and therapy can provide comfort. If the person who is dying or a loved one is unable to express and release stored emotional energies and find closure, they may become pathologically stuck in this stage of grief requiring more intensive therapy for help.

 

Dietician

A specialist in creating a balanced and palatable diet to meet the needs of the individual. A dietician is just one of the many specialists who will be on your care team should you choose palliative care or hospice professionals to be involved in your care.

 

Dignity Therapy

A therapeutic intervention created by Dr. Harvey Max Chochinov, which consists of a series of insightful questions designed to elicit your life story, lessons and advice that you would leave for the benefit of others. This therapy is typically administered by a trained professional. Discussions and answers regarding key questions are transcribed into a carefully edited document that can be shared with others, as a part of your legacy. Click here to view the Dignity Therapy questions and for a link to the official website.

 

Disinternment

 

Disposition (Disposition Certificate)

 

DNI Order (Do Not Intubate order)

A person who does not wish to have a tube placed in their airway and placed on a breathing machine should have Do Not Intubate orders signed by their health care provider. (DNR-Do Not Resuscitate orders are generally understood to include Do Not Intubate orders in most settings. Clarify this with your healthcare provider.) A variety of therapeutic options are still available for respiratory care for those who have DNI orders.  If you do not want to be intubated, here are your alternatives for respiratory care:

  • A. comfort care only (oxygen, suctioning secretions, and repositioning), or

  • B. limited additional interventions, such as an external breathing machine which fits tightly over the face and supports your breathing by pushing air into your lungs during your natural inspiratory breath. This is called non-invasive positive airway pressure

 

DNR Order (Do Not Resuscitate order)

If you do NOT desire CPR, you should have official Do Not Resuscitate (DNR) orders signed by your health care provider and placed in your medical record. In some states, you can even wear an official DNR bracelet, in others you can carry a POLST document with you or have it mounted in a standard place in your home.

If you are found to be in cardiopulmonary arrest and you have DNR orders, this will effectively tell the medical personnel at hand to allow natural death to occur without attempts to restart your heart or to breathe artificially for you.

 

Durable Power of Attorney (Living Will)

 

Dying

If you do not die suddenly and unexpectedly, there are 3 general trajectories of dying observed in those who have chronic illness. Click this link to view the illustrations of these patterns  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC557152/figure/fig1/ 

 

 

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 E


Elder/Elderly

A term commonly used to describe those who are age 65 or older in developed countries, according to the World Health Organization. The term "elderly" does not describe function or well-being, but is used to describe senior members of society. This social group may have a greater perspective of life, based on years lived, and should offer guidance to other generations (see legacy). This group above all others should have well thought out and documented plans regarding their wishes for end-of-life care. There should not be one "elderly" person who has not created a living will document and discussed its contents in detail with family and healthcare providers (see Personal Self-Assessment Scale). 

 

Election of Code

A formal term used to describe the process of choosing whether to receive cardiopulmonary resuscitation or not when you die. The options may include: Full Code, meaning desiring all forms of artificial life support, or, if you desire a natural death with comfort care measures as needed, you should select Do Not Resucitate (DNR) or Allow Natural Death (AND) orders with your health care provider. These wishes must be written by your physician as a order and/or on a state-approved form to be effective in all circumstances.

 

Emergency Department/Emergency Physicians

The Emergency Department, which is commonly known as the "ER" or "Emergency Room", is the portal through which most hospitalizations occur. Emergency Physicians have become the defacto medical experts on end-of-life decision-making at the time of this writing--as few primary care physicians or other specialists discuss end-of-life care and a significant proportion of end-of-life trajectories are set by the care initiated in Emergency Departments during acute, critical illnesses. As such, in the coming years, Emergency Physicians may lead the way in identifying patients who would best benefit from palliative care services or hospice.

 

End-of-Life

The closing chapters in the life of an individual. It is an intense time filled with many decisions (medical, social, emotional, etc). If these decisions are made in advance, when the individual is not imminently entering the end-of-life time, then those closing chapters can become a time of peace, closure and even healing. If no plans are made in advance, the end-of-life period can become quite stressful and confusing, possibly leading to unneccessary suffering and even damaging some relationships.

 

Estranged

Defined as the disruption of a bond of love, friendship, or loyalty. Over the years we may lose valuable relationships for a variety of reasons. However, this is one way in which the healing power inherent in end-of-life time is revealed- coming death often allows old wounds and grudges to fall away in insignificance. Reasons for old emotional pain and barriers may crumble if one approaches this time of life with an open heart. If desired, all efforts should be made to reunite those who have been estranged, regardless of the sentiments of others. Often it is felt that some people have a "hard time passing" if issues in past significant relationships remain unresolved.

 

Eulogy

In our culture, the most common final public reflection on a person’s life is called a eulogy, which is essentially a written or spoken praise of, and review of, the loved one’s life delivered at their memorial or funeral service. The eulogy is part of the closing line and final punctuation to the script of one's life. If you have been asked to give a eulogy, consider it a great honor. Need advice on where to start? click here.

 

Euthanasia

The literal greek translation of euthanasia is "good or easy death" but the term is commonly used to describe the deliberate administration of a drug that will end the life of another who is suffering from an incurable illness. Euthanasia is illegal in the United States (although PAS, a different practice, is legal in Oregon and Washington). The American Medical Association (AMA) does not support euthanasia and we at OKtoDie.com concur with the following AMA statements: Euthanasia is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks. Instead of engaging in euthanasia, physicians must aggressively respond to the needs of patients at the end of life. Patients should not be abandoned once it is determined that cure is impossible. Patients near the end of life must continue to receive emotional support, comfort care, adequate pain control, respect for patient autonomy, and good communication. (I, IV) Issued June 1994 based on the report "Decisions Near the End of Life," adopted June 1991 (JAMA. 1992; 267: 2229-2233); Updated June 1996.

 

 

 F


Feeding Tube

A tube placed either through the nose or surgically through the abdominal wall, which allows for artificial nutrition (click for link) to be delivered to the digestive tract. The placement of both types of feeding tubes are not without risks, including death from complications during placement or use. A feeding tube may be desirable in many health situations but risks versus benefits should be closely evaluated for those who are terminally ill or who are in an end-of-life phase. Research on feeding tube use in dementia patients indicates that 33 percent of them must be restrained or sedated so that the tube may be used at all, and further, feeding tubes have not been proven to extend the lives of those with advanced dementia.

(Should Late Stage Dementia Patients Receive Feeding Tubes Near the End of life?: Annals of Long-Term Care: Clinical Care and Aging 2011; 19 (5):11)

 

Fierro's Four R's: A Tool for Surrogate Medical Decision-Makers (click here to download this tool)

Very little guidance exists for those who are struggling to make medical decisions for others, until now. We have created a tool to aid you in focusing on your loved ones wishes by reconstructing their past.  We believe that our tool has the added benefits of:

-Generating respect for the loved one and his or her life and values;

-Increasing the likelihood that the decisions made are consistent with those values;

-Decreasing guilt and decision-regret for the surrogate medical decision-maker and other family members

 

Financial Pressure

 

Forgiveness

Merciful willingness to excuse a past mistake or offense. Due to the emotional window that opens at the end of life, forgiveness may be more easily accomplished than at other times of life. Ideally, forgiveness should be expressed by those who are dying and to those who are dying for  final closure among all parties. See Six Things That Must Be Said.

 

Frail/Frailty

A weakened condition or state in which energy and strenght are failing. This is often observed in the terminally ill or certain elderly populations who are reaching the end of their lives.

 

Full Code

A medical term meaning that someone desires all forms of artificial life support including electrical shocks, CPR and artificial breathing should they be dying or found dead. Interestingly, if you have made no official decisions regarding wishes for artificial life support measures, by default, all medical professionals consider you "Full code" and will administer CPR, etc.

 

Futile Measures/ Futility

"Medical futility is described as medical therapy that should not be performed because available data have shown that it will not improve the patient's medical condition.1" Althought this definition seems rather straightforward, the idea of futility in medicine remains controversial and often involves ethics committees to make determinations. To avoid such confusion and complications in your end-of-life care, it is reccommended that you have very detailed advance directives including such tools as the Personal Self-Assessment Scale.1Ethics and Medical Futility: the Healthcare Professional's Role Barbara Resnick, PhD, CRNP.)

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 G


Goals of Care

Particularly at the end of life, we should work with our healthcare providers to select medical therapies which help us to reach the goals we set for ourselves and our remaining time. Think about what you want to do or accomplish and how you want to feel before you choose a course of medical treatment; otherwise, you may end up in a condition that you never anticipated or wanted. Ask your doctor to help you choose treatments that give you the best chance of doing the things that you have identified as important--this is how you establish your personal goals of care. See Bucket List.

 

Good Death

Although the direct greek translation of euthanasia is "good death," the terms are not synonymous for Americans. We are all seeking a good death when our time comes, but for the vast majority of us this does not mean euthanasia. Instead, a good death should mean:

š      A sense of control including knowing and honoring the wishes of the one who is dying

      šAssuring comfort and dignity

      šA sense of closure including words of “goodbye”

      šAffirming the unique qualities of the person who is dying

      šTrust in the health care providers

š      Recognition and acceptance of impeding death

      šHonoring the dying person’s beliefs and values1

 

Many other ideas may be included in this list. The question we should answer for ourselves and our loved ones is: "How shall we create a good death?"

( 1 šKehl K (2006). Moving Toward Peace: An analysis of the concept of a Good Death. American Journal of Hospice and Palliative Care. 23, 277-286.)

 

Gratitude

Thankfulness or to be grateful. To express or be the recipient of gratitude creates positive emotions for both the giver and the receiver. The increased frequency of gratitude that is often expressed at the end of life may, in fact, be responsible for the opening opening of an emotional window of opportunity that may occur for those in the end-of-life period- enabling the resolution of old conflicts or the release of negative emotions. It is one of the Six Things That Must Be Said which is recommended for the creation of peace, healing and closure at the end-of-life.

 

Grief

Grief comes with all loss and is natural and expected. It cannot be circumvented. The only way to get through the stages of grief is to go through them. There is no magic trick or technique that lets you skip or lessen your need to grieve. There is no shame in grief. Instead, true and deep grieving provides a pathway to peace for all parties, both the dying and those who survive them.

        There are five commonly recognized stages of grief that most people experience, not necessarily in chronological order:

1.  Denial:  “This cannot be happening.”

2.  Anger:  “It’s not fair! What did I do to deserve this?”

3.  Bargaining:  “Please, God, let me (or my loved one) live for another year. I will change my   life.”

4.  Depression:  “Who cares …nothing can be done anyway.” This stage is often characterized by intense sadness and grieving, as well as some degree of social withdrawal. No one can be pushed out of this stage, but for some medical help and therapy can provide comfort.

5.  Acceptance:  “Everything is going to be OK.” “It’s OK to die.”

 

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 H


Healing

Although the body may be dying, special opportunities exist for healing in the emotional, interpersonal, and spiritual realms at the end of life. An emotional "window of opportunity" opens wide at this time in conjunction with a sense of perspective on one's life.  This combination allows for the resolution of old conflicts, the removal of former barriers and the completion of unfinished business. In these ways, we may become "restored" and "whole," or "healed" on certain levels of our being as a direct result of the knowledge that we are entering the last stage of our lives. See related terms closure, estranged, forgiveness, end-of-life, peace, legacy, life history, life lessons, gratitude
 

Health Care Proxy / Health Care Surrogate

 

High Tech vs High Touch Medicine

We must shift paradigms for end-of-life care and move from a focus on "high tech" medicine, to a focus on a more ethical and comfort-promoting "high touch" form of medicine. "High tech" medicine at the end of life often promotes the indiscrimate use of technology which may both create or prolong physical suffering at the expense of quality time. In contrast, "high touch" medicine is the selective use of modern medicine to prevent and relieve suffering while focusing on the creation of quality and meaning at the end-of-life. Palliative care and hospice are examples of "high touch" medical care.

 

Home

The location where 90 percent of us wish to die, sadly, however, almost 80 percent of us die in medical institutions such as hospitals and nursing homes. We call this the 90-80 dilemma, click here to learn more.

 

Hospice

Comprehensive physical, emotional, spiritual, psychological and social care for a person (and their family) who appears to be in the last 6 months of their expected remaining life. Hospice care is a form of palliative care administered at the end-of-life for those who are focused on creating quality time rather than pursuing cure. Hospice care neither prolongs or hastens death but affirms life and death as parts of a natural and normal part of existence. Of note, studies now suggest that many patients live longer under hospice care, sometimes up to a month longer than those who are not enrolled in hospice programs (Connor et al, Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three- Year Window. Journal of Pain and Symptom Management. Vol 33, No 3, 2007)

 

Hydration--See Artificial Hydration or Dehydration

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In-home care

The alternative to out-of-home care (nursing home or boarding home care) for those who require assitance in living. Most Americans want to live and die at home, as such, in-home care becomes the prefered method for caring for ourselves and others.

 

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Journal

Keeping a journal is an excellent way to record life history, to identify life lessons, to work through grief, and ultimately to create closure.

 

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Legacy

A gift passed on that may transform the life of the receiver. A legacy may be in the form of material items, or even emotional or spiritual gifts. The key is that a powerful legacy may change the course of life for one or more receivers. What legacy will you leave? Don't know? Review the terms: Life History and Life Lessons for ideas.

 

Life History

You have walked a unique path all your own. No one could duplicate it, no one else can tell it, no one can adequately record it but you  You may have lived a life filled with accomplishments, or maybe you have considered your life boring, or worse- wasted. Writing your life history contains the seeds of redemption. What if the record of your choices, either good or bad, changed the course of another's history, or even changed the history of the world? Begin recording your journey now.

 

Life Lessons

While walking this unique path you have encountered tests and trials unique to you. What were your choices? How did you choose? How did those choices change your path from that moment forward? The answers to those questions are your Life Lessons and they have value beyond compare. What if your children, grandchildren, neighbors and friends could grow in wisdom from where you have prevailed, and even where you have failed? Wouldn't those lessons be worth sharing? Begin recording your Life Lessons now.

 

Life Support See Artificial Life Support

 

Living Will

A witnessed document in writing, voluntarily executed by the declarant, that gives directions and may appoint a health care proxy.

 

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Medical Decisions

As often as possible, medical decisions should be discussed and planned for in advance. This is the purpose of advance directives. Additionally, detailed advance directives such as the Personal Self-Assessment Scale may relieve loved ones from the stress and burden of making unguided medical decisions for you, should you become unable to make logical decisions for yourself.

 

Medicaid

 

Medicare

 

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Natural Death, see allow natural death

 

Nausea 

A symptom of many types of illnesses characterized by a feeling that one might vomit. Palliative Care and Hospice professionals are experts in controlling symptoms such as nausea or any others that arise during illness or the end-of-life period.

 

90-80 Dilemma

90 percent of surveyed Americans express their desire to die at home, yet almost of 80 percent of us will die in medical institutions. Many factors have led to this problem, but three main changes will solve this dilemma: 1- Physician leadership in educating our patients honestly about death and dying, 2- Increasing the use of advance directives, 3- Surrogate medical decision-makers honoring advance directives and removing their own desires from end-of-life medical decisions for another. These changes will help re-direct end-of-life care in this country with the help of palliative care and hospice services, to allow more Americans to die at home, as they wish, surrounded by those whom they love.

 

Nursing Home

A long-term care facility for those with chronic illnesses or disability, who are unable to care for themselves.--meaning those who reside in nursing homes are closer to the end of their lives. Unfortunately, about 35% of nursing home residents have no form of advance directives to help their families and physicians to guide their care as they continue to decline and move toward the end of life. This means for that 35 %, they may end up receiving artificial life support or other medical procedures that they never wanted. We reccommend that all persons in long-term care facilities, 100% of those in nursing homes, should have advance directives.(CDC, NCHS Data Brief, Jan 2011, Use of Advance Directives in Long-Term Care Populations. http://www.cdc.gov/nchs/data/databriefs/db54.htm)

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 Organ Failure

At the end of life, one or more of our organs may be in chronic failure states, such as Congestive Heart Failure or Chronic Renal (Kidney) Failure; or, many of our organs may suddenly fail, such as during sepsis (serious blood borne bacterial infections). Organ Failure, of both varieties, is often a cause of death. Ask your doctor how people typically die from organ failure and to help you identify the time when you should turn to comfort-focused medicine rather than cure focused medicine for yourself or someone that you love.

 

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Pacemaker/Defibrillator

A device that is surgically implanted beneath the skin which regulates the heart and/or administers electrical shocks should the heart develop a rhythm which could lead to death. Although pacermaker/defibrillators are an example of the significant advances of modern technology, there are situations in which a terminally ill or very elderly person or their surrogate may choose to refuse, withhold or withdraw this technology, and instead, select comfort focused medical interventions. See also defibrillation.

 

Pain Control / Pain Management

A key component of palliative and hospice care. One of the most common concerns is that the end of life might become a time of physical suffering. This need not be so. Modern medicine has a large variety of pain controlling and soothing medications which may be administered in many ways to meet the goals of the person. If physical suffering can be controlled or eliminated, the end of life may instead become a time of peace and opportunity.

 

Palliative Care

A holistic approach to medical care, palliative care's goal is to ease all types of suffering and pain, including the physical, psychological, social, and spiritual varieties. This type of medicine creates the opportunity for positive and meaningful experiences to replace suffering and physical pain. Palliative Care Specialists may treat you even when you are pursuing cure-focused medicine, and not only when you are in the end of life.

 

Personal Self-Assessment Scale (PSAS) (click here to download a copy)

We have helped create the most straight forward and valuable advance directive tool to-date to identifiy both what medical procedures you choose to accept or forgo, and when these choices should become active, based on objective markers for quality of life. The PSAS should be prominently positioned in your living will. Your healthcare provider should have a copy, as well as your family and any surrogate medical decision-makers. This tool will radically simplify the complicated process of making decisions for yourself or others at the end-of-life. Additionally, if you have completed a PSAS and subsequently, become unable to make decisions for yourself, this tool will ease or even remove the burdens of fear and guilt experienced by those who must make medical decisions for you.

 

Pharmacist

A specialist in the knowledge medications, their effect and mode of administration. Pharmacists are one of the many specialists who will be involved in your care to assure your comfort should you be under the care of palliative care or hospice professionals.

 

Physical Therapy/Therapist

A valuable member of the palliative care or hospice team who "assists the patient in: maintaining functional abilities for as long as possible, reducing the burden of care for the caregivers, and assisting in pain control."  (The role of the pysical therapist in hospice care, Ebel S, et al. Am J Hosp Pall Care, 1993 Sept-Oct:10(5):32-5)

 

Physician-Assisted Suicide

We, here at OKtoDie are opposed to Physician-Assisted Suicide, and argue that it is the wrong answer to the right question:"How do we relieve suffering at the end of life?" Although the states of Oregon and Washington permit physician-assisted suicide, the American Medical Association does not support this practice: "Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer. Instead of participating in assisted suicide, physicians must aggressively respond to the needs of patients at the end of life...(including) emotional support, comfort care, adequate pain control, respect for patient autonomy, and good communication." (AMA Code of Medical Ethics, Opinion:Physician-Assisted Suicide http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion2211.page)

 

POLST (link)

POLST stands for Physician Orders for Life Sustaining Treatment. The POLST program is the most comprehensive and successful advance directive program to date, which transforms the medical wishes of patients into official medical orders for healthcare professionals to follow in any location or circumstance. The POLST program requires state approval. Visit POLST.org to see the status of your state. If no program is underway, start one yourself!

The POLST generally addresses:

A. Cardiopulmonary Resuscitation wishes

     i . Attempt Resuscitation/CPR

     ii. Do Not Attempt Resuscitation/DNR/Allow Natural Death

B. Level of Medical Interventions requested:

     i. Full Treatment

    ii. Limited Additional Interventions

   iii. Comfort Measures Only

C. Choices regarding artificially administered fluids and nutrition:

     i. Long-term feeding tube or IV fluids

    ii. Defined trial period of feeding tube or IV fluids

   iii. No feeding tube/IV fluids

D. Choices regarding the use of Antibiotics

     i. Aggressive Treatment

    ii. No invasive (IV/IM) antibiotics

   iii. No antibiotics except if needed for comfort

 

Proxy See Surrogate Medical Decision-Maker and Advance Directive

 

PSAS (Personal Self Assessment Scale) (( Click here for free download))

 

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Rallying

The concept that while dying, a person may transiently improve or "rally" and live hours or days longer than expected.

(Lois White,  Foundations of Nursing)

 

Respiratory Arrest

When a person stops breathing. This may occur for a variety of reasons.

 

Respiratory Therapist

Respiratory Therapist are an important part of a palliative care or hospice team for those who experience shortness of breath or other respiratory complaints. They are involved in adjusting oxygen delivery systems or respiratory treatments to make the person whom they are serving as comfortable as possible.

 

Restraints

Physical restraints, such as bands around the wrist, may be used in medical facilities if it is felt that the patient is too confused or attempts to interrupt a course of care such as attempts to remove a breathing tube or feeding tube. Strict protocols are followed by medical personel for restraints to be used at all. Of note, 33% of persons with advanced dementia who have a feeding tube must be restrained for the tube to be used properly. This should raise the following question: Why are we selecting medical procedures for people at the end of life which might require restraints?  Do tubes and "neccessary" restraints create dignity and peace at the end of life?

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Shortness of Breath

A feeling of breathlessness. Palliative Care and Hospice professionals are experts in controlling symptoms such as shortness of breath or any others that arise during illness or the end-of-life period.

 

Six Things That Must Be Said

Below are listed six sentiments that must be said to the dying and by the dying, to release the emotional energies that encourage all parties to come to peace and closure about death.Unaddressed, these same emotional energies can aggravate anger, depression, and fear. Please share these six things that must be said to make it OK to die. (Inspired by the writings of Dr. Ira Byock, The Four Things That Matter Most)

      "I’m sorry.”

      "I forgive you.”

      “Thank you.”

      “I love you.”

      “It’s OK to die.”

     “Goodbye.”

   

Social Worker

A crucial member of a palliative care or hospice team, whose job is to identify and address the psychological and social needs of the patients and families who are seeking to maintain, improve or optimize their quality of life.

 

Spiritual Wellness

Developing spiritual wellness at the end of life involves the creation of and understanding of the meaning of one's life. Spiritual wellness may be magnified by expressions of gratitude, forgiveness and love. See Six Things That Must Be Said

 

Spiritual Ceremonies

Identify ahead of time which, if any, spiritual or religious ceremonies you wish to have while you are dying or at your funeral or wake. These should be recorded in detail in your living will and discussed with any and all family members and friends.

 

Surrogate Medical Decision-Maker

To be named the surrogate medical decision-maker for another is a great honor, however, to be the active decision-maker for another may be a great burden if you have been left with little guidance from your loved one. The most important principle of surrogate medical decision-making is understanding that the decision you are making for a loved one should be the same decision that he or she would make for himself or herself in this circumstance. Your desires or that of other family members or friends are NOT the priority here. Please use our new tool to make this process easier for you: see Fierro's Four R's: A Tool for Surrogate Medical Decision-Making

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Terminal

"Terminal" means final, last, end, or ultimate. We commonly use the word "terminal" to refer to an illness that will end a person's life. But we may also think of "terminal" time, or the end of life, in new ways:

šTerminal time is that period of living which comes last. How we use that time is what matters most. What medicine we choose in our terminal time has the greatest effect on the quality of that time. It can become the most powerful period of living.

 

Tracheostomy

A hole that is surgically cut into the front of the neck for the placement of an artificial airway. This most commonly is performed on persons who choose to have prolonged artificial ventilation.

 

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Unresponsive

Just before death, a person may appear to be unresponsive to the environment. See Coma for a detailed explanation of this state.

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Vasopressors

Medications used to keep the blood pressure artificially elevated in circumstances (such as shock) in which the body is unable to regulate the blood pressure itself.

 

Ventilator

A machine used to breathe artificially for someone and is the term is typically used to refer a situation in which a breathing tube is placed in the throat of a patient and is connected to this machine. A ventilator is one component of artificial life support. We must all think carefully about whether there are situations in which we would not want to use this technology. See Personal Self-Assessment Scale

 

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Wake

Two definitions of a "wake" in Western Christian tradition are:  "a watch or vigil held over the body of a dead person during the night before burial or, (in Ireland) festivities held after a funeral." In many traditional cultures, similar ceremonies were and are observed that allow for respectful and even celebratory "farewells"-- giving closure and comfort to the surviving family and community of the deceased. (definitions from the Free Online Dictionary).

 

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