Compassionate Care for the Sick and Dying
It is very difficult to know what to say to one who tells you that he/she has been given a terminal diagnosis, or to a family member who tells you about their loved one. Most of us don't know what to say and fear saying the wrong thing, not wanting to make the person feel worse.
Caring for Loved Ones at Life's End
By: Sister Catherine Mary Clarke, F.S.E.
An old Irish proverb says "it is in the shelter of each other that the people live." Indeed, we are created to depend upon one another and walk together in suffering. But when family members or friends approach life's end, we may not know how best to "shelter" them. Here are some concrete ways we can compassionately care for them.
l. Invite God in: Pope Francis has said that “praying in difficult situations is like opening the door to the Lord, in order that he might enter.” The dying process is a sacred time – a final season to seek closure in this life and prepare for the next in the hope of sharing in Christ’s Resurrection. As you enter into this season with your friend or family member, ask God to accompany both of you.
2. Listen: Try to discover your loved one’s values and how best to honor his or her wishes. This requires true empathy. It can be hard not to assume he or she wants the same thing you think you would want if you were in the same situation. Listen with a non-judgmental ear so your loved one feels free to speak openly.
3. Inform Yourself: Be aware that wishes for refusing ordinary or proportionate treatment – or for pursuing assisted suicide – are usually rooted in fears of dependency, helplessness, or pain. Make yourself available to discuss these or any concerns. Know that ‘hospice care,’ focuses on alleviating pain and other symptoms, meeting basic needs, and providing comfort. Seek to understanding the Catholic Church’s teaching on end-of-life care, which can help you provide authentically loving support that respect life*
4. Be Steadfast in Compassion: The root meaning of “compassion” is to ‘suffer with’ another person” Your friend or family member will likely face ups and downs. Recognize these as part of a natural process. Surround him or her with love, support, and companionship that are “anchored in unconditional respect for their human dignity, beginning with respect for the inherent value of their lives.” The patient’s suffering can be alleviated by your empathy, as well as by quality hospice care by medical personnel.
5. Help Them Achieve Closure: Help your family member or friend define the unfinished personal projects, financial concerns, unresolved relationships, or other matters that occupy his or her mind. Due to changing circumstances, some goals may need to be reframed. Creating and accomplishing this list of unfinished business can help the person discover a sense of purpose and feel more at peace.
6. Provide Opportunities for Resolution: Ira Byock, a hospice medical director, illustrates in his book The 4 Most Important Things how saying “I love you, “ “I’m sorry,” “I forgive you,” and “thank you” can promote much-needed healing during the dying process. You can help ensure a peaceful transition for your loved one by facilitating opportunities for reconciliation with others and for mutual expressions of love and gratitude. Consider offering to invite a priest to hear confession and to administer sacramental anointing of the sick, which heals the soul and prepares us to meet the Lord.
7. Reminisce: Our appetites diminish as our bodies experience a decreased need for food and fluids when we near life’s end. Provide smaller amounts of your family member or friend’s favorite foods. Even if unable to eat them, he or she may still enjoy the aromas and reminisce with you about special memories they evoke.
8. Provide a Peaceful Presence: There comes a time of natural withdrawal from surroundings when dying persons may lose interest in man6y activities that used to be enjoyable. Your own quiet, patient presence can provide important support as your loved one prepares emotionally and spiritually for his or her passing. Hearing can become very acute, so placing the phone in another room, playing favorite music, reading a favorite passage, praying with them or simply sitting quietly with him or her can all be very soothing.
9. Show Tenderness: Those who are dying remain in need of the tenderness of personal human contact. Ask if you might gently brush your loved one’s hair, apply lotion to her hands or fee, or simply hold his hand. Tell stories, laugh, and share memories to reassure the person he or she is a cherished gift, not a burden in any way.
10. Bear Their Transition Patiently: Transition, the time immediately preceding death, may bring rapid physical changes such as breathing patterns as well as changes in mental or emotional states. Try to be patient, and allow the “how” and “when” of death to be between God and your loved one. Ask God for the wisdom to know what final words to say – if anything – and when. As you are able, give your loved one permission to make the transition. For example, you might say, “I love you. It’s okay to go home now.”
Accompanying a loved one in his or her last days is enormously important work, but we do not need to fear our own limitation’s. Pope Francis tells us that God “comes to assist us in our weakness. And his help consists in helping us accept his presence and closeness to us. Day after day, touched by his compassion, we also can become compassionate towards others.”
As our bishop teach, “respect for life does not demand that we attempt to prolong life by using medical treatments that are ineffective or unduly burdensome.” At the same time, intentionally hastening death – whether through drugs or deliberate neglect of basic care – offends our God-given dignity and is never morally permissible. More information: www.usccb.9org/ToLiveEachDay
The 7 Phases of the Dying Process:
- Phase One: Acknowledging the reality, loss of controlAcknowledging the reality, loss of control
- Phase Two: Sharing. Talking about practicals, gaining new control Sharing. Talking about practicals, gaining new control
- Phase Three: Waiting. Declining health and activity, loss of independence Waiting. Declining health and activity, loss of independence
- Phase Four: Accepting: Choosing assistance, gain new independence Accepting: Choosing assistance, gain new independence
- Phase Five: Transition from rational processing, loss of sense of identity Transition from rational processing, loss of sense of identity
- Phase Six: Emergence of spiritual dimension of self, gain renewed identityEmergence of spiritual dimension of self, gain renewed identity
- Phase Seven: Welcoming Sister Death, gain life everlasting Welcoming Sister Death, gain life everlasting
Acknowledging the reality/loss of control: This is usually the rational response to the message that “nothing more can be done” to improve or maintain one’s health or current life status. On a deeper level, you hear the underlying message: “You are going to die”
Whether the message is given gently or harshly, the message is the same: “You are going to die.” However, whether the message is given gently or harshly does impact how one begins to integrate the stark reality of impending death. Integrating that message, the reality which we tend to keep emotionally and psychologically at bay, is really what the dying process is about. The immediate experience is often the desperate sense of loss of control; a loss of control like never before. Fear, anxiety, anger; all the emotions of resistance and self-preservation. As with most losses, there can be an initial emotional numbness, denial, rejection of the information, disbelief. That’s part of our amazing defense system. We don’t have to try to convince someone of the reality of their impending death, everyone needs to come to it on their own, in their own way and time; that is their unique process. If I advert to the reality that I am going to die, I advert to my utter lack of control. The kind of relationships one has will greatly impact one’s ability to acknowledge this reality. The more we trust the ones closet to us and the more we have depended upon them for emotional and spiritual support, the more we’ll be able and willing to acknowledge the loss of control and the emotions that go along with that. Practically, this phase can look as though nothing has changed so there is no immediate press to initiate change.
Waiting and experiencing a gradual decline in physical ability and stamina/Loss of independence: Having acknowledged the reality with loved ones and now living with expectations of decline and death, there is often a sense of frustration that builds while waiting for ‘the end” to come. We all tend to brace ourselves emotionally, imagining that we can be somewhat prepared for the moment of death.
Days, weeks, even months pass and the dying person might finally ask, “how long is this going to take, I’m so tired and don’t feel like doing anything and my family is getting tired…” This is the point at which the dying person might tend to withdraw emotionally. Not a lot to say, just tired and does not feel a lot like interacting, or discouraged because he wants to interact and does not have the energy. Depression can set in if this process is long and the person is particularly used to being active and in control. The loss of ability to provide for the daily needs of life; driving, getting in and out of bed, going to the bathroom, bathing, cooking, etc. is the loss of independence. “I’m feeling lazy”, “I’m too tired but I don’t want Joe to have to do it for me, he’s tired too,” “No, no, I can do it, just give me time, I’m ok…” You do not want to take someone’s independence from him, but you can reassure him that when he cannot do the task, you are there and are happy to do the task for him. In the salience of being alone, sitting for hours, too tired to “do” just thinking about life, thinking about when he could do anything, when everyone was home, when the neighbors asked him for help, when he was the one taking care of everyone; the reality becomes unavoidable. He may or may not say it, but he knows on some level, “I can’t do anymore.” Another loss, another death. The loss of independence. Anger, fear, frustration, irritability, sadness, loneliness are all very normal and ok at this point. Family or caregivers may not recognize the significance of the irritation in his responses, but it’s a necessary part of the process. Family can be encouraged just to listen and acknowledge his feelings.
Waiting and experiencing a gradual decline in physical ability and stamina/ Loss of independence:
Having acknowledged the reality with loved ones and now living with expectations of decline and death, there is often a sense of frustration that builds while waiting for “the end” to come. We all tend to brace ourselves emotionally, imagining that we can be somewhat prepared for the moment of death.
Acceptance, choosing to allow others to help/gain a new sense of independence: A very difficult point of transition for most people is coming to the realization and accepting the reality that he or she needs help with everyday life, and, more difficult yet, believing that others want to help.
For most people in their dying process, the very fight to remain independent and the determination not to “burden” their family, gradually exhausts them When the person can face the emotional pain of dying to yet another aspect of himself, he can begin to let down the defenses and risk exposing the fears of allowing others to demonstrate their love and concern through physical care and presence. We cannot anticipate what this will be like. It is, like all phases of living and dying, unique in every situation. Acceptance of being cared for, of being loved, is the lesson of independence that only losing everything can teach. Sometimes people think that their husband or wife “doesn’t care” enough and will not want to provide for his/her needs. Willingness to be weak and vulnerable, acknowledgement that we need help, desire to be loved and to love is the deepest form of independence. And…the best way to reconnect with those we may have grown emotionally distant from.
Transition from the rational to the spiritual/loss of sense of identity: We, as a culture, tend to identify ourselves with what we do, to who we relate, how we think others perceive us. When all that changes, who does that leave us to be?
This interior dilemma is more common and more natural, than one might think. Identity is who you are; one’s name is a way of “labelling” the person. Our genetic makeup, cultural experiences, relationships within family and beyond family, our thoughts, ideas, interests, beliefs and life experiences of doing and being are all part of who we are. When a dying person has “too much time” to think about his life, and to consider where he is now, where he might be going, who comes to see him, who does not…it is difficult to avoid the questions that arise within about how well he has lived his life, loved his family, been honest in relationships, etc. When thoughts and feelings arise that are uncomfortable and have been avoided, they can awaken an unfamiliar realm with that the dying person may not recognize, or may fear, and may still try to avoid. (Psalm 143:1-11 Compline Tues.) When a person feels he can no longer do what he considered to be his defining activities, such as his role as husband, father, brother or friend, employer or employee…there is no easy way to distract him from or for him to avoid that awakening experience of reviewing his life and trying to give context to both the good and the difficult times. With this, there is often an unsettling sense of losing one’s sense of his identity as he has defined it and/or as he thought others have defined him. Then, what else is there but the great abyss between the known and the unknown? What we can see and have control over is less intimidating that that which we cannot see, nor control, but sense is present, whatever it is. Generally, if a person has experienced some level of faith in his life, he can recognize something familiar about the inner experience and may be able acknowledge the spiritual realm. Even if one has practiced their faith and related to God all his life, that does not necessarily make the transition an easy one. But it does give context to the struggle. When there is no faith, the struggle is more difficult, for the person and for his family. We are confronted with ourselves; who we really are, who we are before God. There is no way to, and no need to, defend ourselves or attempt to turn away.
The emergence of the spiritual dimension of self/renewed identity.
To find comfort and be at peace with solitude with oneself and with God is a good sign that one has gained, or perhaps regained, a deeper sense of self. A sense of self is really our true identity where we are free to relate to others and to God, and even to be alone without fear or reserve. When we achieve this inner sense of peace, the “Spiritual” dimension, for which we strive all of our lives, begins to permeate our rational dimension, providing context for all relationships and experiences. Even those who have struggled or chosen not to believe in God, or who are angry with God for whatever reason, recognize something within which is bigger than we are. Ones perspective on life becomes focused on others and on God.
Welcoming Sister Death/gain Life everlasting.
When St. Francis was dying, he asked his brothers, the Friars, not to get caught is the despair of losing him, but to know that they will see each other again in eternal life. He said, “I welcome Sister Death, for it is she who will lead me to our Lord Jesus Christ and Most High God.”
Death is not something we need to fear if we are willing to “die” throughout our lives. Death is a horizon toward which we need to look and for which we can prepare all of our life. Dying, at any stage of the game, is not easy: we believe in the gift of participation in Christ’s redemptive suffering, acknowledging choices we have made and the consequences they bear. Simply stated, sin is the rejection of God’s Will and of His love. Whether or not I choose to acknowledge my sins does not change the consequences of them. When we choose to acknowledge the ways, we have rejected God’s love and ask for forgiveness, seeking to change the sin condition, then we experience “dying” in everyday life. “The more you die before you die, the less you have to die when you die” The goal is to approach Life Everlasting, to reach out to the hand of Sister Death, with the ultimate joy and peace that only the Presence of our loving and merciful God can give us.