As a hospital Chaplain I have encountered patients and families facing end-of-life care decisions on a number of occasions. One of my earliest experiences stands out as formative, partly because my mom had recently passed away while under home hospice care. We can never know precisely what others are going through when dealing with difficult situations. However, sometimes life and the Holy Spirit prepare us for these encounters in ways we do not realize at the time with lessons in humility, compassion, and empathy.
So you have sorrow now, but I will see you again and your hearts will rejoice, and no one will take your joy from you.
– John 16:22
I was ministering to the daughter of a rapidly deteriorating elderly patient. She was also caring at home for her mother who had dementia. Already grieving the “loss” of her mother to Alzheimer’s Disease, the daughter was tearfully overwhelmed when we first met. She desired “simply” to take her father home and to care for both parents together. But she was struggling with decisions around maintaining dialysis, ventilator, feeding tube, and numerous medications for her hospitalized father. She knew he did not want CPR should his heart fail, but they had never discussed these other interventions. She felt torn. On the one hand, she believed this was not what her father wanted. But neither did she wish to “play God,” knowing her decision to stop these procedures likely meant his earlier death.
Sitting on the outside looking in as we are now, it is easy to overlook some of the factors weighing heavily in someone else’s decision process. Let us consider a few:
The first is moral agency: the ability to make ethical decisions, i.e., moral choices, based on what is right and what is wrong. Connected with that would be moral advocacy: being an agent of moral authority on behalf of someone else.
Next is human dignity: that everyone holds an exclusive value of personhood by virtue of their humanity and deserves respectful ethical treatment. In light of the revelation that humans are made in the image and likeness of God (Genesis 1:27), our ethics must safeguard that great dignity of personhood with which God has endowed each of us.
And lastly, there are typically various sources of outside authority weighing in at some point in these situations. In this case these “authorities” included: Sacred tradition – the patient was a devout Catholic and the daughter was wrestling with what the Church and Scripture teaches regarding decisions that allow for a natural death that may otherwise feel like hastening it; honoring one’s parents and their wishes; and Reason – there were practical limits to what level of care they could afford.
Sometimes life and the Holy Spirit prepare us for these encounters in ways we do not realize at the time with lessons in humility, compassion, and empathy.
To further complicate matters, this daughter had an older sister “in the medical field,” living some distance away, who was calling frequently to question what was or was not being done. She was also a strong proponent of doing “everything medically possible” to keep their father alive as long as possible. The daughter I was with was on the scene, living it, yet was feeling hesitant, afraid of being second guessed by her older sister. In a way she was frozen by indecision, feeling her sister’s medical “authority” trumped her own first-hand experience. She had said to me several times, however, “if only she would come here and see what he is going through, she would understand.” And let us not forget, this daughter was also caring for their mother, splitting her time between their home and the hospital.
Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you and learn from me; for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.
– Matthew 11:28-30
To humanize the scene even a little more, at one point sitting in conversation with the younger daughter bedside in her father’s hospital room, she started to cry. She was wearing a face mask, and her glasses began to fog up as she cried. I remember well feeling her sadness, her anguish palpable, her loneliness heartfelt, the heaviness of her burden, as the fog of indecision engulfed her. We sat quietly together for many minutes before she began telling her story again.
At the daughter’s request, I had arranged for a Catholic priest to come and perform the Sacrament of the Sick for her dad (sometimes referred to as Last Rites). I had hoped the daughter could be present when the priest was there, but he came during the evening, and she had already gone home to be with her mom. It is a beautiful ritual, with very comforting prayers. I prefer it when family can be present as it often provides an element of closure. I was able, however, to let her know that her father had opened his eyes several times during the ritual and made the sign of the cross at the end. That little bit of news and having been able to do that for her father, something she shared was important to him, seemed to cheer her.
Because there were various authoritative factors at play, an immediate moral judgment appeared impossible; even the guiding rules/principals we often look to for direction seemed elusive. Growing up, and particularly my schooling in science and engineering, taught me to look for rules and principles to establish guidelines for making decisions. Then “real life” happens and listening for the symphonic resonance within the conflicting rules, principles, and various authorities ringing “truth” is something I have learned to recognize and deal with as a product of age and experience; one benefit of getting older, I surmise. To this point, think of Pilate asking/saying to Jesus, “What is truth?” (John 18:38) And now reflect on the younger daughter, given all the factors weighing on her, what is her “truth?”
If you continue in my word, then you are truly disciples of mine; and you will know the truth, and the truth will make you free.
– John 8:31-32
Eventually, thankfully, the experience turned from one in which the younger daughter felt she had no control to one in which she regained control and moral agency. This happened through a family conference with both daughters (the second/older one on the phone) and the medical team. The sisters were able to realize that they were both driven by their mutual love for their parents but were expressing it from their own perspective. That, ultimately, it was not about them, but about allowing their father the human dignity he desired and deserved, and by recognizing and demonstrating the moral agency to achieve it on his behalf. They decided together to remove/limit the interventions and allow their dad to go home on hospice/comfort care.
I had tried to help the younger daughter realize that any decision born out of absolute love was the primary moral compass needed. The liberating peace she experienced came from the incarnational expression of love and compassion for her parents she was able to find, demonstrating that moral agency and human dignity can/do go together, and how empowering they can be when exercised out of love.
Incarnational discipleship, which is seeing Christ in others, being Christ to others, points to the incarnate Jesus who embodied in His teachings and in His practices the Kingdom of God. We are all wounded in life in some form or another. It is in the glorious truth of the cross that we recognize how our own wounds become connected to Christ’s suffering. How our life narrative and those to whom we minister come together with the narrative of the Gospel. It is the role of pastoral ministry to help connect those narratives through compassionate care in our own practice of discipleship.
Now I rejoice in my sufferings for your sake, and in my flesh I complete what is lacking in Christ’s afflictions for the sake of his body, that is, the church, of which I became a minister according to the divine office which was given to me for you, to make the word of God fully known.
– Colossians 1:24-25
Even when there are no clear answers to ethical dilemmas, we can help others to make decisions that, while tough, affirm their character and their place in the Kingdom. By providing moral advocacy, being present as an advocate of the “real presence” of Christ and the moral authority that resides in the personhood of the one to whom we are providing care, sets them free to realize God’s will. It is a privilege to witness the glory and moral goodness of God in the lives of those for whom we are called to be moral advocates.
So soon after losing my mother but having had an incredibly positive experience with her hospice care, and the liberating peace it provided my family during her final weeks, I believe shaped me for that encounter. My affirmation with this family came when seeing their peace with the decisions made. That, and the deep and abiding sense that there was no place I would rather have been than there in the pit with them and a witness to their spiritual healing. What a blessing!
The Incarnation is the ultimate reason why the service of God cannot be divorced from the service of man.
– Dietrich Bonhoeffer, The Cost of Discipleship
Reflection Questions:
- Reflect on Matthew 25:31-46 – Think about your understanding of the Incarnation; how does someone manifest an “incarnational expression of love and compassion?”
- Reflect on Colossians 1:24-25 – What do you think St. Paul meant by “I complete what is lacking in Christ’s afflictions for the sake of His Body, that is, the church;” what could be “lacking” in Christ’s sufferings that we could possibly “complete?”
- Can you relate to the daughter and/or her older sister in the story above; what were the difficulties that each appeared to be dealing with in their relationship with their sibling? Their parents? Themselves?
Scripture References
Proverbs 3:5-6 John 16:22 Genesis 1:27
Matthew 11:28-30 John 18:38 John 8:31-32
Colossians 1:24-25 Matthew 25:31-46
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