“Take me home. I’m done with hospitals, doctors and all that comes with it. I just want to be in my own home, my own bed.” Although some family members wanted mom to “keep fighting, not to give up,” mom’s wishes prevailed in what ultimately turned out to be a wonderful gift to her family; going home with hospice care. The COPD patient, who had been increasingly in and out of emergency rooms and hospital beds the past few years, spoke up and made her wishes known after a lifetime of trying to please others.
For to me to live is Christ, and to die is gain. If it is to be life in the flesh, that means fruitful labor for me. Yet which I shall choose I cannot tell. I am hard pressed between the two. My desire is to depart and be with Christ, for that is far better.
Philippians 1:21-23
She did have an Advance Healthcare Directive that spelled out no CPR or intubation should her heart and/or breathing stop. But even with that, no one in her family had taken the time to clarify what ongoing care she did want given her current condition.
Having previously steered clear of the hospice conversation, one domineering family member thought of hospice “as the last option of the hopeless”. They also said, “She’s always been a fighter, I’m sure that’s what she would want to do.” When asked, “Have you had that conversation with her?”, they just shook their head saying, “I don’t know how.”
Frequently, there it sits, often until it’s too late to avoid causing unnecessary discomfort, suffering, and escalating medical treatments. Costly therapies that can rapidly move from medically ordinary to morally extraordinary.
In this case, mom was able and willing to make that decision herself, taking the burden off the family, as she had done so many times, in so many ways, in the past. She went home with hospice care and lived another five weeks, spending quality time with family and caregivers focused on her comfort.
Too often hospice is perceived as “giving up” when it is really about giving quality to the time remaining. The family told me later that the gift of that time, away from hospitals and invasive medical treatments, was priceless for them. They got to say what needed saying. They avoided doubts and regrets regarding medical decisions. They spent what time they had in a way they could live with after mom was gone, knowing the right choice for her was her own.
The plans of the mind belong to man, but the answer of the tongue is from the Lord.
All the ways of a man are pure in his own eyes, but the Lord weighs the spirit.
Commit your work to the Lord, and your plans will be established.
Proverbs 16:1-3
In my work as a hospital Chaplain, I routinely encountered end-of-life and critical care situations where families were tormented and divided over medical care options for a loved one who was incapacitated and/or incapable of making decisions regarding their own care. Many times, these situations arose largely because there was no Advanced Directive/Living Will in place. Or if there was, it did not go beyond “Do Not Resuscitate” or “Do Everything”. Or the family members had avoided having that conversation altogether, let alone get into the details of ongoing care and fears/hopes/wishes.
Sometimes, it becomes too late once life support is initiated (e.g. ventilator, feeding tube), to know the wishes/desires of an ill family member regarding their care. This often leaves the family to agonize over the “right thing” to do with trepidations of “playing God.”
Lacking complete medical information, fear, or concerns over being second guessed/judged by family and friends can frequently cause costly indecision. This leaves the options regarding life sustaining treatments in the hands of the medical team who have little choice but to do everything medically possible unless/until instructed otherwise by the patient, family, or healthcare proxy.
None of us lives to himself, and none of us dies to himself. If we live, we live to the Lord, and if we die, we die to the Lord; so then, whether we live or whether we die, we are the Lord’s. For to this end Christ died and lived again, that he might be Lord both of the dead and of the living.
Romans 14:7-9
It is not uncommon to become engaged in a medical decision process for oneself or for a loved one. Eventually it will likely happen for all of us, if it hasn’t happened for you already. My hope is that my readers take this opportunity to look at and think about your situation; for yourself and your loved ones. Be prepared by knowing what is important for you and then prepare those who would be making decisions on your behalf. The same goes for those for whom you would be making decisions. For peace of mind, please go ahead, have the conversation.
In the next post, I will share a real-life scenario that I encountered where a family had to wrestle with some of these questions. It may help guide the thought process for your own situation.
Reflection questions:
- Do you have an Advance Healthcare Directive? Do you know who your Healthcare Proxy is/would be? Have you had a conversation with them lately about what is important to you, should they ever be in the position of making medical decisions on your behalf? Have you addressed different situations to clarify your wishes?
- Likewise, are you the Healthcare Proxy for someone? Have you had a conversation with them lately about what is important to them, should you ever be in the position of making medical decisions on their behalf? Have you addressed different situations to clarify their wishes?
- Reflect on the Scripture passages shown above; do they help inform/guide you in making these kind of decisions? If so, how? If not, why not?
Scripture References
Philippians 1:21-23 Proverbs 16:1-3 Romans 14:7-9
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