Death is a universal phenomenon. It does not only happen to people over ninety years old. Death happens in natural or unnatural means to anybody. Advance care planning is not only for seriously ill or older people but for all competent and capacitated adults. The cases of Karen Quinlan, Nancy Cruzan and Terri Schiavo that sparked public interest in medical ethics and end-of-life care happened when these three women were in their 20’s.
The right time to discuss death and end of life care is now.
Death is one of the most difficult and uncomfortable topics of conversation. Although there are changes on how we see death because of the integration of bioethics, spirituality, and humanities in medical education and practice, our culture, in general, is aversive to death. Many still believe that the field of medicine is more assertive in doing everything to save lives and to battle death. Many people still see death as a failure of medicine. I can personally attest to this particular social “belief”. There are many times when I walked through the hospital corridors wearing my clerical collar and people would make statements such as, “oh that’s not a good sign, a priest is here.” When I walked along with some doctors in the hospital premises, some would make silly comments like, “Now doctor, you finally hand over your patient to the priest,” or “It is not a good sign to see a doctor and a priest seeing a patient together.”
There are still many people who wait to call for a priest or a chaplain for spiritual support until the patient is already gasping for the last breath. Some believe that talking about death or preparing the patient spiritually would ensure that death would happen soon. There are also those who think that the decision not to discontinue aggressive and life-sustaining treatments may provide God the opportunity to listen to their prayers and perform miracles at the last minute.
Citing these lines of reasoning does not mean discounting our faith, but presenting and correcting a seemingly misleading direction that is still prevalent in our faith community. If we remain uninformed of the true tenet of the Church’s teachings, particularly on end- of- life care, we may not be able to effectively plan a dignified end-of-life decision.
Many people confront end-of-life issues when a crisis is already happening. They expressed confusion on how to proceed with the medical care of their loved ones who were already at the point of death. These topics were not part of the conversation in their families. Most points of confusion include the provision of hydration and nutrition and removal of ventilators and life support. There are also apprehensions on stopping treatments because of guilt feeling or lack of consensus among family members on certain interventions.
During a time of serious illness, family members are already confronted with difficulties, ranging from financial constraints of medical care to emotional upheavals from an impending loss. It would be an added burden for them to be subjected to the sensitive task of trying to figure out the wishes or best interests of their loved ones. We can take this burden off their shoulders through advance care planning.
Various situations on end of life can undoubtedly cause heightened emotions. Family members deal with many concerns, ranging from the adjustment of their usual routines and work schedule, temporary separation from their own families, changes of roles, financial implications of illness, the anticipation of death, and many other factors. All these situations may pose challenges to healthcare and end-of-life decisions. At times, they bring chaos to the family. There are clashes of personal values because even though we are raised as a family with the same parents, each member grows up having unique perspectives and experiences in life. There is a possibility that family members may experience conflict and hostility in trying to figure out what their loved ones want and do not want towards the end of life. Sometimes, family members are confronted with guilt feelings to forego life-sustaining treatments even when death is quite imminent. All these dynamics could strain relationships and could even leave some families in a squabble.
There are those who expressed intentions of not wanting to prolong suffering when death is imminent. They do not want their loved ones to be subjected to excessive burden from hospitalization when there is no hope for recovery. However, oftentimes, the result is the opposite. Many die in hospitals tethered to respirators and other contraptions at the time of death. Some underwent aggressive and extraordinary procedures upon family’s request to save life at all means and costs.
Doctors, nurses, and other healthcare team members grapple to initiate appropriate interventions because of lack of guidance or consensus from family members. Families may find themselves discussing and disagreeing even at the bedside in front of their dying loved ones over decisions whether to stop or to continue certain medical interventions and treatments. There are stories of family feud resulting from outbursts of baseless accusations that may come up because of disagreements. Sadly, some settle family matters in courtrooms. Relationships are torn apart.
A person’s wishes are known to families and caretakers through an advance directive.
Family feuds on end-of-life issues can be avoided if we talk about end- of -life care and make our wishes known to our loved ones and surrogates through advance care planning and discussions. A person’s preferences may be explicitly made known to others through an advance directive.
As the term implies, an advance directive is a set of instructions or guidelines made in advanced by a competent person specifying his/her medical care when he or she becomes physically and mentally incapacitated to express personal health care wishes. A competent person is one who can make an informed decision and is able to understand the nature, extent, and probable consequence of a medical recommendation. He/She is also able to make an evaluation of the risks and benefits of a proposed medical intervention and weigh it against alternative options. A competent person must be able to communicate an understanding of his own directives.
The two main types of an advance directive are living will and surrogate directive.
The two main types of an advance directive are A) living will ( also known as treatment directive) and B) surrogate directive (also known as proxy directive, or power of attorney for healthcare). A living will is an instruction about the kind of medical care a person would want. The living will is a document that usually refuses treatment including life-sustaining treatments, interventions and the provision of artificial nutrition and hydration towards the end of life. Although most living wills state limitations of treatment or the patient wanted to forgo life-sustaining treatments, this is not always the case. A directive can also request aggressive treatment. Patient has the choice to indicate in their living will that they want such treatment.
A living will cannot be used to demand something illegal or immoral
A living will cannot be used to ask for something illegal or immoral such as ending one’s life or demanding any kind of treatments or interventions. Healthcare providers decide appropriate treatments and interventions. They cannot just administer them because of patient’s or family’s demand. In Catholic institutions, “If a patient or his/her proxy presents any request or advance directive that opposes Catholic teaching, the hospital is under no obligation to fulfill it, given the hospital’s commitment to moral medical practice and its proper vision of the human good.” Patients and family members must be provided with the opportunity for discharge in order to seek out another facility. It is important to communicate any plans in a timely manner to the family or surrogate.
It is not possible to cover all aspect of care in the living will. It is important to appoint a surrogate to address specific medical issues
The living will is written in general terms, enough to give healthcare providers a blueprint of the kind of healthcare direction at the end of life that the patient wishes and desires for himself/herself. It is not possible to cover all aspects and specifics of care or interventions in the living will. There are hosts of medical conditions, treatments or procedures that may arise when the patient becomes incompetent or incapacitated.
The healthcare surrogate, who is knowledgeable of the patient’s values, beliefs and wishes, has the moral and legal authority to address or interpret vague issues not specified in the declaration of living will.
If there are situations and medical interventions that may be needed, the surrogate would decide based on his/her knowledge of the patient’s values and beliefs. The surrogate would act as the patient would act if he/she competent to choose even if what the patient has requested is not what the surrogate would choose for himself. This is called the substituted judgment standard.
A healthcare surrogate should be familiar with the principal’s values, principles, and beliefs.
The principal must appoint a surrogate with care. It is important to choose a person who truly knows you. You must have shared a significant time with him/her to know what matters in your life, including your values and preferences. The surrogate should be 18 years of age or older and should be accessible, at least by a phone call. It is recommended to appoint only one proxy to avoid conflict. An alternate proxy needs to be identified if the primary proxy will not be able to discharge his/her duties.
Advance directives should meet legal requirements.
Advance directives should meet legal requirements like the signature of witnesses and patient’s competence. The document must also be kept in a secure location, which is accessible when needed. Members of families and health care surrogates must also be informed of the particulars of the directive so that they may be able to seek clarifications if needed. The emergency room or intensive care unit is not the ideal place to start gathering and looking for documents.
An advance directive has no expiration date attached to it unless otherwise changed by the principal. It is important to keep the documents updated. It’s a good practice to review, re-sign and re-date them especially when there are changes of the principal’s health or circumstance. It may be a good practice to look over the advance directive regularly (perhaps, every year) even if everything is stable. Through this practice, physicians taking care of the patient can be assured that they are following the patient’s current wishes.
Advance directives can be changed.
Competent individuals can change their decisions regarding life-sustaining treatments at any time. Treatment decisions for incapacitated patients can be changed by their surrogates, “provided that the change is consistent with the patient’s explicit preferences, or in the absence of these, the patients’ inferred values and preferences; or, if these cannot be known, the patient’s best interest.” When the surrogate is not sure what the patient would want, he/she should follow the “best interests” standard on the patient’s behalf. The best interest standard takes into account the entire physical, moral, emotional and spiritual good of the patient.
Declarations in advance directives are legally-recognized; Surrogates cannot act whatever they wanted for the patient.
Those who provide care have legal as well as moral responsibilities to follow the directive unless there is a convincing proof that a provision may not serve a patient’s interest, or when it violates the rights of others. The surrogate does not have a blank check to decide whatever he/she wants for the patient. The Hasting’s Center clarifies the limitations of surrogates in its guidelines for end-of-life decisions:
If the responsible professional has concerns about the ability of a surrogate to make treatment decisions in keeping with the standards for surrogate decision-making, the professional may seek an ethics consultation to determine whether the surrogate understands the obligations of surrogate decision making and can discharge them. On occasion, judicial review may be necessary.
The declarations in advance directives are legally and morally recognized. It is crucial to be educated and be aware of the legal, spiritual, and moral implications of our declarations. We must consider how our decisions affect our faith, our relationship with God and with our family in writing an advance directive. As Pope Pius XII cited, we are only obliged to use ordinary or proportionate means to preserve life. All temporal activities including life and death are only subordinated to spiritual ends. Our advance directives should show the values inculcated in our faith.
We cannot just write anything we can think about in our advance directive. Writing an advance directive entails discernment–prayer, consultation with families, physicians, and the Church’s teachings on end-of-life issues. Fr. Richard Mc Cormick, SJ, a pre-eminent Catholic bioethicist of the 21st century, wrote that we must walk a balanced middle path between medical vitalism and medical pessimism.
We need to avoid the extreme positions of vitalism and pessimism in initiating an advance directive.
Medical vitalism is the view that preserves life at all cost. It permits no cessation of efforts to prolong life. It views that life is the greatest possible value and should be sustained at all cost. Medical pessimism is the other view that “kills when life seems frustrating and burdensome.” Bioethicist Dr. David Kelly also uses the term subjectivism to describe an absolute, autonomous choice of an individual to pursue or cease treatments or procedures. The extreme position of subjectivism is the permission of active killing based only on the subjective choice of an individual. Subjectivism is a phenomenon common in a society where there is extreme individualism and when every choice is good so long as it has the permission of the autonomous agent. The subjective view does not consider the moral implications of specific treatments and decisions.
The Roman Catholic Tradition has rejected vitalism, negativism, and subjectivism. We take the middle course and discern the moral teachings of our faith. Life is indeed a basic and precious good, but a good to be preserved precisely as the condition of other values. However, life should not also be prolonged under all circumstances. Extending life at all costs may be prevalent in our day and age when advances in medicine and technology are available to treat medical conditions and prolong life. In turn, what we often encounter is the prolongation of the dying process. Death may be conceived as an enemy of medical science, and we try to do everything at all costs to avert death.
An important component in initiating an advance directive is dialogue.
Family members need to have a conversation and understanding on the importance of care of end of life. It may be helpful to seek spiritual direction/counseling from clergy, therapists, or social workers, especially when we are deciding for someone else. Fr. Richard Mc Cormick writes, “The meaning, substance, and consummation of life are found in human relationships, and the qualities of justice, respect, concern, compassion, and support that surround them.” We should all strive to keep relationships in the family and in the community even though we are struggling with illness and health crisis.
Death is something that everyone must face. We need to confront it with openness and love. Our proper understanding of the purpose of medicine, the meaning of life as well as the Church’s teachings on both the sanctity and the quality of life will guide us in preparing an advance directive. This attitude and practice help ensure friendship and unity with our family and with God.
 Virginia Catholic Conference -Diocese of Arlington and Diocese of Arlington, Catholic Advance Medical Directives: Making Life Decisions, (Richmond, VA, December 2010), 4 available at http://www.cdrcmfl.org/wp-content/uploads/2014/01/Advance-Medical-Directive.pdf, accessed on January 23, 2018.
 David F. Kelly. Medical Care at the End of Life: A Catholic Perspective (Washington DC: Georgetown University Press, 2007), 5.
 Matthew P. Lomanno,”Healthcare Proxy and Advance Directives,” in Catholic Healthcare Ethics: A Manual for Practitioners, 217.
 Matthew P. Lomanno,”Healthcare Proxy and Advance Directives,” in Catholic Healthcare Ethics: A Manual for Practitioners, 216.
 Virginia Catholic Conference, Catholic Advance Medical Directives: Making Life Decisions, 5.
 Nancy Berlinger, Bruce Jennings, Susan Wolf, the Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life, revised and expanded second ed. (New York: Oxford University Press, 2013), 63.
 Matthew P. Lomanno, “Healthcare Proxies and Advance Directive,” in Catholic Healthcare Ethics: A Manual for Practitioners, 216
 Nancy Berlinger, Bruce Jennings, Susan Wolf, The Hastings Center Guidelines for Decisions on Life- Sustaining Treatment and Care Near the End of Life, revised and expanded second ed. (New York: Oxford University Press, 2013), 64.
 National Catholic Bioethics Center, A Catholic Guide to End-of-Life Decisions: An Explanation of Church Teachings on Advance Directives, Euthanasia, and Physical –Assisted Suicide, 2011 Philadelphia, PA
 McCormick, Richard, How Brave A New World? (Garden City, New York: Double Day and Company, Inc., 1981), 345.
 Ibid, 345.
 David F. Kelly. Medical Care at the End of Life: A Catholic Perspective. Washington DC: Georgetown University Press, 2007, 5.
 Matthew P. Lomanno, Healthcare Proxies and Advance Directives, 2017.
 Richard Mc Cormick, How Brave A New World, 345.
 Richard MC Cormick, How Brave a New World?, 346.
Does one need an attorney to assist in completing a Designation of Healthcare Surrogate form and Living Will form? Does the Catholic Church or our home parishes provide the forms?
I know a lot of people who wrote their advance directives themselves.
it is pretty straightforward. This is a sample of an advance directive from a Catholic perspective.
It is actually part of the blog. Thank you Mike: fhttps://helpingfamiliesproject.com/2018/05/05/a-sample-of-an-advance-directive/