Digging Deeper -
In my paper "Pastoral Care to the dying and their families," I pointed out that when people are experiencing death they know that their time has come to a close. In the following pages, I want to highlight the needs of the dying.
The dying has the need to be treated as a living human being. Death comes in a single moment and not a minute before, but too often we begin to regard a person who is dying as less than living. It is important for us to see each patient as the unique individual that they are right up to the moment of their death.ElizabethKubler Rose points out that the greatest gift a dying person can be given is dignity at death.
The need to maintain a sense of hopefulness, however changing its focus may be. While many cultures and faith traditions believe in life after death, most dying people want reassurance at death that death is part of life. A sense of hopefulness is critical to living and dying. While a patient may need to abandon their hope for a cure, they do not have to let their sense of hopefulness die. They can reframe what they hope for, each in their own way. A patient can hope that they will not lose control over their life as the end nears. They can hope that their caregivers can manage their dying. They can hope that their loved ones will be able to carry on without them. They can hope that they won't be alone. As a hospital chaplain the author has ministered to many dying patients who need to be assured that all will be well for them when the curtain closes on them. The assurance helps the dying to die with hope that their death has someone to manage it.
The need to be cared for by those who can maintain a sense of hopefulness, however changing this may be. It is not always easy to find health care professionals who will help a patient maintain a sense of hope. Sometimes, the patient may have to do a little work. Hope is our companion in life and death; it is important not to take this away from our patients.
The need to express feelings and emotions about death in one's own way. One of the greatest gifts we can offer to a person who is dying is to listen to what they have to say, allowing them to speak freely without contradiction or interruption. The need to express our feelings is universal, and as death approaches, the need to share and speak from the heart grows. Allowing a person to express their thoughts about dying can make the last chapter of their lives profoundly meaningful.
The need to participate in decisions concerning one's care. A patient always should be allowed to participate in making decisions about all aspects of their care, including, when possible, how and where they want to die. Dying on one's own terms, however, requires forethought, advance planning and communication.
The need to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one's needs. These people include physicians and other members of the medical team and caretakers. People who are dying need tender, loving care and caregivers who will honor their needs. How a person dies reflects their caregiver's beliefs more than their own.
The need to expect continuing medical care, even though the goals may change from cure to comfort goals. As disease progresses, a patient's priorities and needs are very likely to change from those at the time of their diagnosis. Goals change and earlier decisions may no longer apply. The priorities of a person with end-stage disease will be different from those they had when first diagnosed.
The need to have all questions answered honestly and fully. The medical team must be able to provide answers to questions in terms that a patient understands. A patient should never be afraid to keep asking for clarification until they understand what the doctors are telling them.
The need to seek spirituality. The quest for spirituality is a search for a place of peace and safety. Many people begin to look for this place in the final chapters of their lives. Some use religion; others take different paths. A patient should be allowed to seek their answers in their own way and to be able to call upon others for guidance or help.
The need to be free of physical pain. No one should have to live in pain or die in pain. Patients and their loved ones should know that we now have very effective pain management. For medical professionals, pain should be the fifth vital sign. It is very important, since pain is purely subjective, to believe the patient's reports of pain.
The need to express feelings and emotions about pain in one's own way. It is normal for people who have a life-threatening illness to experience depression and anger. They often have strong feelings about pain and fear. It is important that they be able to express these feelings to someone who will listen. Sometimes, just talking about these feelings -- venting -- can help a person manage them better. At other times, other underlying issues, which a professional usually can identify and help a patient address, may be present. Depression and other strong emotions are appropriate at this time of life, and ant depressive medications should not be used without a complete investigation by the physician to make sure they are warranted.
The need of children to participate in death. We teach children by our examples. As they watch us, they have the opportunity to see and learn about life's components and the roles that love, humor, fear, compassion and other emotions play in living a full life. We try, however, to protect them from death and exclude them from this process. Most children can benefit from understanding death as a natural part of life and from being included in the dying process of a family member or other loved one. Patients will often ask us if it is appropriate for children to see illness. I believe it is, as long as it is accompanied with appropriate explanations.
The need to understand the process of death. We rarely talk about the physical, biological process of death, and little has been written about it. Many people have appeared to struggle, but some researchers believe that the body releases endorphins, special hormones that block pain and give one a sense of tranquillity and joy, during these final moments. No two deaths are exactly alike. We all have different needs, and a patient may have a need to understand what goes on as the body winds down.
The need to die in peace and dignity. Death for many often is like a storm, and insuring peace and dignity can be difficult. Family members and loved ones often must act on the patient's behalf to make sure that death is managed in a dignified way and in keeping with the patient's desires.
The need not to die alone. Most people are afraid of dying alone, but this does not have to happen. We can allow visiting around the clock in hospitals and intensive care units. We can lift restrictions to just close family members -- but only if the patient desires.
The need to expect that the sanctity of the body will be respected after death. When life leaves the body, we must still treat that body as a representation of the person who was there and continue to respect it. To the extent that arrangements can be planned and shared in advance, they will provide great comfort to both the patient and their survivors.
Sources:
http://www.lastactspartnersip.org/index
Frauser, M, Lo, K, & Kelly, R. (21996). Spiritual care. Trainer Certification Program [Manual]. Largo, FL: Hospice Institute of the Florida Suncoast
The End-of-Life Nursing Education Consortium (ELNEC)
The Wheel of Life, Elizabeth Kubler-Rose
Workshop for chaplains at TMC by Kessler - the co-author of - Life Lessons, Student of Elisabeth Kübler-Ross, author - On Death and Dying.
OBMC:Chaplain E.Kaburu Kei09
In my paper "Pastoral Care to the dying and their families," I pointed out that when people are experiencing death they know that their time has come to a close. In the following pages, I want to highlight the needs of the dying.
The dying has the need to be treated as a living human being. Death comes in a single moment and not a minute before, but too often we begin to regard a person who is dying as less than living. It is important for us to see each patient as the unique individual that they are right up to the moment of their death.ElizabethKubler Rose points out that the greatest gift a dying person can be given is dignity at death.
The need to maintain a sense of hopefulness, however changing its focus may be. While many cultures and faith traditions believe in life after death, most dying people want reassurance at death that death is part of life. A sense of hopefulness is critical to living and dying. While a patient may need to abandon their hope for a cure, they do not have to let their sense of hopefulness die. They can reframe what they hope for, each in their own way. A patient can hope that they will not lose control over their life as the end nears. They can hope that their caregivers can manage their dying. They can hope that their loved ones will be able to carry on without them. They can hope that they won't be alone. As a hospital chaplain the author has ministered to many dying patients who need to be assured that all will be well for them when the curtain closes on them. The assurance helps the dying to die with hope that their death has someone to manage it.
The need to be cared for by those who can maintain a sense of hopefulness, however changing this may be. It is not always easy to find health care professionals who will help a patient maintain a sense of hope. Sometimes, the patient may have to do a little work. Hope is our companion in life and death; it is important not to take this away from our patients.
The need to express feelings and emotions about death in one's own way. One of the greatest gifts we can offer to a person who is dying is to listen to what they have to say, allowing them to speak freely without contradiction or interruption. The need to express our feelings is universal, and as death approaches, the need to share and speak from the heart grows. Allowing a person to express their thoughts about dying can make the last chapter of their lives profoundly meaningful.
The need to participate in decisions concerning one's care. A patient always should be allowed to participate in making decisions about all aspects of their care, including, when possible, how and where they want to die. Dying on one's own terms, however, requires forethought, advance planning and communication.
The need to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one's needs. These people include physicians and other members of the medical team and caretakers. People who are dying need tender, loving care and caregivers who will honor their needs. How a person dies reflects their caregiver's beliefs more than their own.
The need to expect continuing medical care, even though the goals may change from cure to comfort goals. As disease progresses, a patient's priorities and needs are very likely to change from those at the time of their diagnosis. Goals change and earlier decisions may no longer apply. The priorities of a person with end-stage disease will be different from those they had when first diagnosed.
The need to have all questions answered honestly and fully. The medical team must be able to provide answers to questions in terms that a patient understands. A patient should never be afraid to keep asking for clarification until they understand what the doctors are telling them.
The need to seek spirituality. The quest for spirituality is a search for a place of peace and safety. Many people begin to look for this place in the final chapters of their lives. Some use religion; others take different paths. A patient should be allowed to seek their answers in their own way and to be able to call upon others for guidance or help.
The need to be free of physical pain. No one should have to live in pain or die in pain. Patients and their loved ones should know that we now have very effective pain management. For medical professionals, pain should be the fifth vital sign. It is very important, since pain is purely subjective, to believe the patient's reports of pain.
The need to express feelings and emotions about pain in one's own way. It is normal for people who have a life-threatening illness to experience depression and anger. They often have strong feelings about pain and fear. It is important that they be able to express these feelings to someone who will listen. Sometimes, just talking about these feelings -- venting -- can help a person manage them better. At other times, other underlying issues, which a professional usually can identify and help a patient address, may be present. Depression and other strong emotions are appropriate at this time of life, and ant depressive medications should not be used without a complete investigation by the physician to make sure they are warranted.
The need of children to participate in death. We teach children by our examples. As they watch us, they have the opportunity to see and learn about life's components and the roles that love, humor, fear, compassion and other emotions play in living a full life. We try, however, to protect them from death and exclude them from this process. Most children can benefit from understanding death as a natural part of life and from being included in the dying process of a family member or other loved one. Patients will often ask us if it is appropriate for children to see illness. I believe it is, as long as it is accompanied with appropriate explanations.
The need to understand the process of death. We rarely talk about the physical, biological process of death, and little has been written about it. Many people have appeared to struggle, but some researchers believe that the body releases endorphins, special hormones that block pain and give one a sense of tranquillity and joy, during these final moments. No two deaths are exactly alike. We all have different needs, and a patient may have a need to understand what goes on as the body winds down.
The need to die in peace and dignity. Death for many often is like a storm, and insuring peace and dignity can be difficult. Family members and loved ones often must act on the patient's behalf to make sure that death is managed in a dignified way and in keeping with the patient's desires.
The need not to die alone. Most people are afraid of dying alone, but this does not have to happen. We can allow visiting around the clock in hospitals and intensive care units. We can lift restrictions to just close family members -- but only if the patient desires.
The need to expect that the sanctity of the body will be respected after death. When life leaves the body, we must still treat that body as a representation of the person who was there and continue to respect it. To the extent that arrangements can be planned and shared in advance, they will provide great comfort to both the patient and their survivors.
Sources:
http://www.lastactspartnersip.org/index
Frauser, M, Lo, K, & Kelly, R. (21996). Spiritual care. Trainer Certification Program [Manual]. Largo, FL: Hospice Institute of the Florida Suncoast
The End-of-Life Nursing Education Consortium (ELNEC)
The Wheel of Life, Elizabeth Kubler-Rose
Workshop for chaplains at TMC by Kessler - the co-author of - Life Lessons, Student of Elisabeth Kübler-Ross, author - On Death and Dying.
OBMC:Chaplain E.Kaburu Kei09
