Living Will
by Victoria Brewster, MSW
Physician assisted suicide, euthanasia, and dying with dignity are three phrases that are related. The terminology used is different in different locations—for example, the United States, Canada, or Europe.
Physician-assisted suicide refers to the physician providing the means for death, most often with a prescription, according to the The World Federation of Right to Die Societies (http://worldrtd.net/term/physician-assisted-suicide). The patient, not the physician, will ultimately administer the lethal medication. Euthanasia generally means that the physician will act directly—for instance, by giving a lethal injection—to end the patient's life, according to New Zealand Resource for Life. Dying with dignity is a term used for current pending Canadian and American legislation. Both Gentle Death and Right to Die are softer terminology used from my research online to describe and discuss end-of-life issues (see http://www.dyingwithdignity.ca).
Death, dying, and end-of-life issues are not easy topics to raise or discuss, and there will be many who are in favor and just as many not in favor of one choosing to end his or her life. I usually think in terms of, “What would I want?” It is difficult to know what I would want in the future, but this is an issue that needs to be explored. Like wills or mandates, it is a topic to be discussed with our clients.
In listening to clients, I hear on a regular basis about the persistent pain they experience. They tell me it is difficult to be motivated, to be in a good mood, to do chores around the house, to go shopping, or to leave the house or bed, for that matter. Sometimes, individuals are taking strong prescription pain medications in addition to a lengthy list of other medications, causing serious side effects. Mobility is limited, and what is their quality of life? Should the decision of assisted suicide, dying with dignity, or euthanasia rest with the government, with physicians, with other helping professionals, or with the clients, as long as they are cognitively intact? Some verbally state they have had enough and they do not want to live anymore. These are issues of relevance to social workers, as well as other mental health professionals, as we are often the front-line staff.
The person contemplating this decision is one who has a debilitating illness, disease, or medical condition, possibly chronic health issues and typically suffers with chronic pain. Other effects can be loss of mobility, the ability to communicate verbally and/or cognitively, along with the ability to make choices in a rational manner. These are not easy decisions, and they should be made in collaboration with social workers, physicians, nurses, psychologists, or psychiatrists, as well as family, should they choose to be involved. It is important to note that older adults may not wish to involve their families, and they will choose a professional for this discussion. Some are protecting their family members. Some do not want to involve them. Still others do not want to go there.
The individual may already be diagnosed as palliative or requiring hospice. Palliative means a person has a serious illness and the care focuses on improving the quality of life of the individual in body, mind, and spirit (Health Canada, 2009). Palliative care can be combined with curative treatment. Goals consist of reducing pain or side effects of treatment, supportive counseling, other treatment options, and whatever the client wishes to discuss.
Hospice care provides medical services, emotional support, and spiritual resources for individuals who are in the later stage of an incurable illness or disease. Hospice can be provided in the home environment or in an institutional setting. The objective is to make the person comfortable through pain and/or symptom management for the last few months, weeks, or days of life, depending on the regulations of the respective local or federal government (see http://www.webmd.com/balance/tc/hospice-care-topic-overview).
Palliative care may include a bereavement component for both the patient and the family (if there is one). Death and dying are natural parts of the life cycle. To be born, one must die. We live in a society that is aging. More individuals (Baby Boomers, those born between 1946-1964) are entering the 65+ demographic each day, and as they continue to age, they will require more assistance provided by professionals, including social workers.
Not all communities offer palliative care. Even if they do, quite often there is a lack of resources and services as a result of budget constraints. This can be an uncomfortable area for service providers and an area that some may choose not to work in. The question is: why? If dying is an inevitable part of life, and our clients want to talk about it, should we not go there?
Why are other provinces, states, countries not making dying with dignity a front and center issue? Imagine being diagnosed with Lou Gehrig’s Disease (ALS, a fatal neurodegenerative disease), Parkinson’s, a cancer that slowly metastasizes to your internal organs. Slowly your body will be robbed of its mobility and basic functions? The pain is unbearable, and no medication can get to the root of it. What would you choose for your child, your spouse, your parent, your best friend? Would you want them to suffer unnecessarily? Would you support their decision to die with dignity? What would you want in the same situation?
These are not easy questions, but they deserve the same attention as one would give to basic human rights of shelter, food, education, clothing and employment. Why is it acceptable to relieve an animal’s suffering and end his or her life with the advice/consultation of a veterinarian, but this same option is not available to humans?
Currently, there are four states in the United States that have Dying with Dignity legislation: Oregon in 1994, Washington in 2008, Montana in 2009, and most recently, Vermont in 2013. Lawmakers in Connecticut, Hawaii, Kansas, Massachusetts, Montana, New Hampshire, New Jersey, and Pennsylvania have all recently considered and introduced right to die legislation. (See http://www.deathwithdignity.org/advocates/national.)
In Canada, Quebec has decided assisted suicide or dying with dignity is part of medical care and should fall under the jurisdiction of the province vs. being a federal matter. “Quebecers overwhelmingly support this, making assisted dying a possibility,” according to Curtis (2013). The Federal criminal code prohibits assisted dying, redefining it as a provincial health matter. In 2012, the province of British Columbia declared in a ruling that criminalizing assisted dying is unconstitutional according to the BC Supreme Court. The federal government appealed this decision and a verdict is pending (CBC News, 2012).
Other countries with assisted suicide laws or euthanasia laws are: Switzerland in 1941(both physician assisted and non-physician assisted), Colombia in 1997 (voluntary euthanasia), Belgium in 2002 (euthanasia), and the Netherlands in 2002 (assisted suicide), according to http://www.dyingwithdignity.ca/.
An example of an individual who chose to end her life with euthanasia is Susan Griffiths. In the spring of 2013, she left Winnipeg, Canada, for Switzerland. She went to the Digitas Clinic. She suffered from Multiple System Atrophy, an incurable disease with Parkinson-like symptoms, including loss of balance, movement, and control of virtually every bodily function. She didn’t want to suffer needlessly, watching and waiting for her body to slowly wither away, being in pain and relying on medications to lessen the pain. Nor did she want to rely on machines to keep her body going. Her family was with her and she ended her life on her terms (Reynolds, 2013).
As a social worker or future social worker, where do you stand on this issue? If a client brings up the topic, do you or will you engage him or her in a discussion? Have you received training on this issue? Do you discuss it in supervision or with other social workers? Has the topic come up in your university classes? Are you open and willing to participate in discussion groups and workshops, or to seek additional courses in the areas of death, dying, palliative care, hospice care, aging, and grief?
Death and Dying
If you are hesitating or find yourself uncomfortable with this topic, perhaps the question to ask is: why? Your religious affiliation, values, and morals may play a part in how you approach this topic, along with your own thoughts on the issue of death and dying. What has been your personal experience? Have you been exposed to a family member or friend who was in palliative or hospice care and died?
As with any issue or topic that is raised by a client, should you be unsure of how to proceed, speak to your direct supervisor or other staff for guidance. If you do not have an answer or are uncomfortable with the question, honesty is the best way to go. Explain that you would like to consult a supervisor to provide the best guidance and perhaps ask the client if he or she would like to discuss the topic with a spiritual advisor or leader, such as a priest, minister, or rabbi. If you cannot provide the answer, seek the necessary resources. In the meantime, if you as a social worker or social work student are willing, explore with clients their views on death and dying, focusing on their religion, cultural practices, and beliefs.
Keep in mind that if a client raises the topic of death and dying with you, the client has raised it for a reason. You may be the person with whom the client is most comfortable having this discussion. Sometimes, as helping professionals, we have to push through our discomfort and lack of knowledge and go where the client is. Listen, be compassionate, be empathic, hold their hand if this is what they want. Take the journey with them. Often clients just wants to talk and have a professional listen with no expectation. They just want a listening ear.
References/Resources
Curtis, C. (2013, August 20). Quebec sees no conflict with Canada’s stance on euthanasia. The Gazette. Retrieved from: http://www.montrealgazette.com/news/Quebec+sees+conflict+with+Canada+stance+euthanasia/8813030/story.html
CBC News. (2012, October 5). Assisted-suicide Crusader Gloria Taylor dies in B.C. Retrieved from: http://www.cbc.ca/news/canada/inside-gloria-taylor-s-battle-for-the-right-to-die-1.1186092
Episode 107 - Dr. Allan Barsky: Ethical Issues in End-of-Life Decision Making. (2012, November 12). inSocialWork Podcast Series. [Audio Podcast] Retrieved from http://www.socialwork.buffalo.edu/podcast/episode.asp?ep=107
Episode 87 - Dr. Pam Miller: Oregon's Death with Dignity Act: Hospice Social Work and End-of-Life Decision-Making. (2012, January 9). inSocialWork Podcast Series. [Audio Podcast] Retrieved from http://www.socialwork.buffalo.edu/podcast/episode.asp?ep=87
Health Canada. (2009, June 4). Palliative Care. Retrieved from: http://www.hc-sc.gc.ca/hcs-sss/palliat/index-eng.php www.hc-sc.gc.ca
Reynolds, L. (2013, April 12). Killing Her Softly: Susan Griffith’s Last Days. Winnipeg Free Press. Retrieved from: http://www.winnipegfreepress.com/breakingnews/Killing-her-softly-202733931.html
WebMD Medical Reference from Healthwise. (2011, December 29). Hospice Care. Retrieved from: http://www.webmd.com/balance/tc/hospice-care-topic-overview
Victoria Brewster, MSW, has 16 years of experience, 13 of which have been as a case manager and group facilitator with seniors/older adults. Her areas of interest are aging, healthcare, end-of-life issues, improvements in education for youth, advocacy, and social justice.
The Topic of Physician Assisted Suicide, Death, and Dying in Social Work-
Physician Assisted Suicide, Euthanasia and Dying with Dignity-
Physician assisted suicide, euthanasia, and dying with dignity are three phrases that almost mean the same thing, but the terminology used is different depending on where one lives—the United States, Canada, or Europe. Physician-assisted suicide refers to the physician providing the means for death, most often with a prescription, according to the The World Federation of Right to Die Societies (http://worldrtd.net/term/physician-assisted-suicide).
The patient, not the physician, will ultimately administer the lethal medication. Euthanasia generally means that the physician will act directly—for instance, by giving a lethal injection—to end the patient's life, according to New Zealand Resource for Life. Dying with dignity is a term used for current pending Canadian and American legislation. Both Gentle Death and Right to Die are softer terminology used from my research online to describe and discuss end-of-life issues (see http://www.dyingwithdignity.ca).
Death, dying, and end-of-life issues are not easy topics to raise or discuss, and there will be many who are in favor and just as many not in favor of one choosing to end his or her life. I usually think in terms of, “What would I want?” It is difficult to know what I would want in the future, but this is an issue that needs to be explored. Like wills or mandates, it is a topic to be discussed with our clients.
In listening to clients, I hear on a regular basis about the persistent pain they experience. They tell me it is difficult to be motivated, to be in a good mood, to do chores around the house, to go shopping, or to leave the house or bed, for that matter. Sometimes, individuals are taking strong prescription pain medications in addition to a lengthy list of other medications, causing serious side effects. Mobility is limited, and what is their quality of life? Should the decision of assisted suicide, dying with dignity, or euthanasia rest with the government, with physicians, with other helping professionals, or with the clients, as long as they are cognitively intact? Some verbally state they have had enough and they do not want to live anymore. These are issues of relevance to social workers, as well as other mental health professionals, as we are often the front-line staff.
The person contemplating this decision is one who has a debilitating illness, disease, or medical condition, possibly chronic health issues and typically suffers with chronic pain. Other effects can be loss of mobility, the ability to communicate verbally and/or cognitively, along with the ability to make choices in a rational manner. These are not easy decisions, and they should be made in collaboration with social workers, physicians, nurses, psychologists, or psychiatrists, as well as family, should they choose to be involved. It is important to note that older adults may not wish to involve their families, and they will choose a professional for this discussion. Some are protecting their family members. Some do not want to involve them. Still others do not want to go there.
The individual may already be diagnosed as palliative or requiring hospice. Palliative means a person has a serious illness and the care focuses on improving the quality of life of the individual in body, mind, and spirit (Health Canada, 2009). Palliative care can be combined with curative treatment. Goals consist of reducing pain or side effects of treatment, supportive counseling, other treatment options, and whatever the client wishes to discuss.
Hospice care provides medical services, emotional support, and spiritual resources for individuals who are in the later stage of an incurable illness or disease. Hospice can be provided in the home environment or in an institutional setting. The objective is to make the person comfortable through pain and/or symptom management for the last few months, weeks, or days of life, depending on the regulations of the respective local or federal government (see http://www.webmd.com/balance/tc/hospice-care-topic-overview).
Palliative care may include a bereavement component for both the patient and the family (if there is one). Death and dying are natural parts of the life cycle. To be born, one must die. We live in a society that is aging. More individuals (Baby Boomers, those born between 1946-1964) are entering the 65+ demographic each day, and as they continue to age, they will require more assistance provided by professionals, including social workers.
Not all communities offer palliative care. Even if they do, quite often there is a lack of resources and services as a result of budget constraints. This can be an uncomfortable area for service providers and an area that some may choose not to work in. The question is: why? If dying is an inevitable part of life, and our clients want to talk about it, should we not go there?
Why are other provinces, states, countries not making dying with dignity a front and center issue? Imagine being diagnosed with Lou Gehrig’s Disease (ALS, a fatal neurodegenerative disease), Parkinson’s, a cancer that slowly metastasizes to your internal organs. Slowly your body will be robbed of its mobility and basic functions? The pain is unbearable, and no medication can get to the root of it. What would you choose for your child, your spouse, your parent, your best friend? Would you want them to suffer unnecessarily? Would you support their decision to die with dignity? What would you want in the same situation?
These are not easy questions, but they deserve the same attention as one would give to basic human rights of shelter, food, education, clothing and employment. Why is it acceptable to relieve an animal’s suffering and end his or her life with the advice/consultation of a veterinarian, but this same option is not available to humans?
Currently, there are four states in the United States that have Dying with Dignity legislation: Oregon in 1994, Washington in 2008, Montana in 2009, and most recently, Vermont in 2013. Lawmakers in Connecticut, Hawaii, Kansas, Massachusetts, Montana, New Hampshire, New Jersey, and Pennsylvania have all recently considered and introduced right to die legislation. (See http://www.deathwithdignity.org/advocates/national.)
In Canada, Quebec has decided assisted suicide or dying with dignity is part of medical care and should fall under the jurisdiction of the province vs. being a federal matter. “Quebecers overwhelmingly support this, making assisted dying a possibility,” according to Curtis (2013). The Federal criminal code prohibits assisted dying, redefining it as a provincial health matter. In 2012, the province of British Columbia declared in a ruling that criminalizing assisted dying is unconstitutional according to the BC Supreme Court. The federal government appealed this decision and a verdict is pending (CBC News, 2012).
Other countries with assisted suicide laws or euthanasia laws are: Switzerland in 1941(both physician assisted and non-physician assisted), Colombia in 1997 (voluntary euthanasia), Belgium in 2002 (euthanasia), and the Netherlands in 2002 (assisted suicide), according to http://www.dyingwithdignity.ca/.
An example of an individual who chose to end her life with euthanasia is Susan Griffiths. In the spring of 2013, she left Winnipeg, Canada, for Switzerland. She went to the Digitas Clinic. She suffered from Multiple System Atrophy, an incurable disease with Parkinson-like symptoms, including loss of balance, movement, and control of virtually every bodily function. She didn’t want to suffer needlessly, watching and waiting for her body to slowly wither away, being in pain and relying on medications to lessen the pain. Nor did she want to rely on machines to keep her body going. Her family was with her and she ended her life on her terms (Reynolds, 2013).
As a social worker or future social worker, where do you stand on this issue? If a client brings up the topic, do you or will you engage him or her in a discussion? Have you received training on this issue? Do you discuss it in supervision or with other social workers? Has the topic come up in your university classes? Are you open and willing to participate in discussion groups and workshops, or to seek additional courses in the areas of death, dying, palliative care, hospice care, aging, and grief?
Death and Dying
If you are hesitating or find yourself uncomfortable with this topic, perhaps the question to ask is: why? Your religious affiliation, values, and morals may play a part in how you approach this topic, along with your own thoughts on the issue of death and dying. What has been your personal experience? Have you been exposed to a family member or friend who was in palliative or hospice care and died?
As with any issue or topic that is raised by a client, should you be unsure of how to proceed, speak to your direct supervisor or other staff for guidance. If you do not have an answer or are uncomfortable with the question, honesty is the best way to go. Explain that you would like to consult a supervisor to provide the best guidance and perhaps ask the client if he or she would like to discuss the topic with a spiritual advisor or leader, such as a priest, minister, or rabbi. If you cannot provide the answer, seek the necessary resources. In the meantime, if you as a social worker or social work student are willing, explore with clients their views on death and dying, focusing on their religion, cultural practices, and beliefs.
Keep in mind that if a client raises the topic of death and dying with you, the client has raised it for a reason. You may be the person with whom the client is most comfortable having this discussion. Sometimes, as helping professionals, we have to push through our discomfort and lack of knowledge and go where the client is. Listen, be compassionate, be empathic, hold their hand if this is what they want. Take the journey with them. Often clients just wants to talk and have a professional listen with no expectation. They just want a listening ear.
References/Resources
Curtis, C. (2013, August 20). Quebec sees no conflict with Canada’s stance on euthanasia. The Gazette. Retrieved from: http://www.montrealgazette.com/news/Quebec+sees+conflict+with+Canada+stance+euthanasia/8813030/story.html
CBC News. (2012, October 5). Assisted-suicide Crusader Gloria Taylor dies in B.C. Retrieved from: http://www.cbc.ca/news/canada/inside-gloria-taylor-s-battle-for-the-right-to-die-1.1186092
Episode 107 - Dr. Allan Barsky: Ethical Issues in End-of-Life Decision Making. (2012, November 12). inSocialWork Podcast Series. [Audio Podcast] Retrieved from http://www.socialwork.buffalo.edu/podcast/episode.asp?ep=107
Episode 87 - Dr. Pam Miller: Oregon's Death with Dignity Act: Hospice Social Work and End-of-Life Decision-Making. (2012, January 9). inSocialWork Podcast Series. [Audio Podcast] Retrieved from http://www.socialwork.buffalo.edu/podcast/episode.asp?ep=87
Health Canada. (2009, June 4). Palliative Care. Retrieved from: http://www.hc-sc.gc.ca/hcs-sss/palliat/index-eng.php www.hc-sc.gc.ca
Reynolds, L. (2013, April 12). Killing Her Softly: Susan Griffith’s Last Days. Winnipeg Free Press. Retrieved from: http://www.winnipegfreepress.com/breakingnews/Killing-her-softly-202733931.html
WebMD Medical Reference from Healthwise. (2011, December 29). Hospice Care. Retrieved from: http://www.webmd.com/balance/tc/hospice-care-topic-overview
Victoria Brewster, MSW, has 16 years of experience, 13 of which have been as a case manager and group facilitator with seniors/older adults. Her areas of interest are aging, healthcare, end-of-life issues, improvements in education for youth, advocacy, and social justice.