Palliative Care in a Culture of Death – Some Thoughts.

Caring for a dying person can be difficult.  Caring for a dying person in our culture, a culture increasingly focused on death, can be doubly difficult, especially when questions of hydration, feeding, and assisted death come up.   In our culture, we seem to easily forgo feeding.  The mantra has been that dehydration is a comfortable way to die.  And now, if things become uncomfortable we have sanctioned ending life with medical killing.

Let me share a story based on a real life.  The themes are the same.  The details are changed to respect privacy.  (note – Among other things this story refers for feeding tubes and IVs.  It is not a definitive guide on their use in palliative care.  The best approach depends on each situation.  This story is only one situation and is meant to stimulate thought an discussion.)

I recently had the privilege of caring for a relatively young chronically disabled woman whose progressive decline, it turned out was due to cancer.  Cancer experts had nothing to offer to suppress the cancer.  Talking and eating were presenting increasing difficulties.  Food intake was poor.  Weight and strength were also declining.  Without improvement, getting out of bed would no longer happen.  Yet, this young woman remained positive and upbeat.  She demonstrated zest for life and rarely complained.

Her family, concerned about her decline and weight loss, wanted to know if anything more could be done?  Other caregivers repeatedly asked if this patient was palliative.  The implication was, “She is palliative, has the family been told?”  Was the family’s question, “could anything more be done?”, realistic? This woman was dying, but was she imminently dying?

Some cancers rapidly invade and lead to death quickly.  Others gradually smoulder along, leaving a person to die years later. On which end of the spectrum did this woman’s cancer fall?  To answer this, a biopsy to get a piece of the cancer is often needed.  In this woman’s situation, a biopsy required major surgery, with significant risk.  No one, including myself, recommended a biopsy.  This left the rate of cancer growth and the rate decline as the only predictors of how imminent death may be.

Her rate of  decline, beginning many months ago, had recently increased.  Was this increase primarily due to her cancer?  Or could it be due to nutritional decline from poor swallowing?  Feeding had been poor for weeks and was getting worse.  To sort this out, blood tests may help, but the answer may only be found by seeing how she responds to good nutrition.  In hospital, where my patient was, there are two relatively simple options. One is  giving fluids through a tube and needle (an intravenous.)  The other is giving food through a tube into the stomach.  If the swallowing problems are mainly due to dry mouth and throat, then intravenous may be quite helpful.

Should an intravenous or feeding through a tube be done?  Many today think it terrible to use such artificial means to prolong her life.  How artificial and terrible is an IV or a feeding tube?  In the majority of hospital situations, the use of IVs is not questioned and is a form of hydration taken for granted.   A feeding tube is a fine soft tube that goes in the nose down into the stomach.  they are not pleasant to insert but,once in,  are usually well tolerated.  (Yes, I have experienced a feeding tube inserted into myself.)  Feeding tubes do not require intensive care units and  can even be managed at home by family.  Swallowing is bypassed, but the food is absorbed in the normal way.  A feeling of fullness can be achieved.  Without  feeding or fluids, dehydration and deterioration of the body gradually occurs.  We are told this a comfortable way to die, but how do we know this?  Dehydration and malnutrition can lead to dry mouth, dry eyes, difficulties swallowing and speaking, weakness, increase in bed sores, etc.  How do we know these things are not worse than the discomfort of feeding tubes and IVs?  There are times when a person is dying that more fluid is inappropriate.  If there is a lot of swelling from fluid retention, more fluid can make things worse.  This was not the case with my patient.

Today, when someone is thought to be dying, even when fluid retention is not a problem, medical caregivers often discourage the use of feeding tubes and IVs.  Surely we should not be prolonging life, should we?  What should I do? Should I encourage IV fluids or feeding via a tube?  We are told the patients desires are to be followed.  But my patient could not talk much.  Her decision makers looked to myself and other caregivers for guidance.  In light of the uncertainty in such situations and society’s negative view of such means, decisions to hydrate and feed are often delayed.   With delay comes further dehydration and malnutrition.   One can be left wondering how much of the decline is due to cancer, and how much is due to malnutrition and dehydration?

Caring in such situations is not easy.  Am I doing the right thing?  If it is clear the cancer is rapidly growing and invading organs vital to life, it is probably right to just offer what little a patient is able to take by mouth.  What if it is not clear?  Having the weight of being responsible for such decisions on one’s shoulders is hard.  I expressed this to another caregiver, who promptly referred to the patients poor quality of life.  Then the caregiver asked, what I would do if asked for “assisted death?”  If asked, would I participate in using drugs intended to rapidly bring death to my patient?

As I struggle through the weight of caring, there is comfort in knowing we live before the Lord God, who is the author and finisher of life.  He has our days numbered.[1]  I do not change the time the Lord has planned for my patient on earth.  This does not mean there is no purpose in what I do, as I care for my patient.  God relies on what we do as he accomplishes his good plans.  I do not pretend to fully understand this.  Rather, I accept it.  It is a comfort.  As I struggle with the question of what is the right thing to do, I do not need to “beat myself up” over whether I am shortening or prolonging my patient’s life.  This is true for the patients loved ones as well.  What we do is important, but equally important is why we do what we do.  Do I desire to  help my patient to live as well as they can until the day appointed for them by God?  Or do I set out to kill my patient, thinking I know when it is best for my patients time on earth to end.

From what I have shared, I hope you can appreciate that there is not an absolute answer to the use of IV hydration and feeding  tubes, and I think that our society defaults to not feeding too easily.  Not knowing for sure if one is dong the right thing can be emotionally hard.

On the other hand, the question of giving medications with the intent of rapidly bringing  about a person’s death is clear cut.  It is not our place to determine the timing of a person’s life.  This belongs to the Lord.  Given the biblical truth that God determines our days, those who, with intent to kill, involve themselves in “assisted death” do not determine the timing of death, for this is the Lord God’s.  Rather they take on responsibility.  Before the eyes of God, the one who intends to kill is guilty of breaking the sixth commandment not to murder.  To involve one’s self in assisted death ought to be hard due to guilt.

It is hard as we care for those who are suffering, especially toward the end of their life.  As we do, let us embrace life, not death.  Death came into God’s good creation as a consequence of sin.  Death is not a good thing that we should celebrate and embrace.  For those who know Jesus, the way the truth and the life, the death of their body is passage from this life of hardship and sin to await the resurrection where they will be given a new perfect body, and live forever in the new heaven and the new earth.

[1] Psalm 139:13-16

For You formed my inward parts; You covered me in my mother’s womb.  I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well.  My frame was not hidden from You, When I was made in secret, And skillfully wrought in the lowest parts of the earth.  Your eyes saw my substance, being yet unformed. And in Your book they all were written, The days fashioned for me, When as yet there were none of them.


2 thoughts on “Palliative Care in a Culture of Death – Some Thoughts.”

  1. Dear Dr. Kenyon,
    Thank you for the post. Such cases are never easy and they are always unique.

    In my years of working in hospice and palliative care I’ve learned to re-frame the care I give these types of patients. Its not about prolonging life or hastening death, for me its about being a vessel of compassion by using the gifts and skills God has given me to manage symptoms.

    While the Scriptures are clear, “do not murder,” they are equally clear, “Give strong drink to the one who is perishing, and wine to those in bitter distress; let them drink and . . . remember their misery no more” (Pro. 31:6-7b). I understand “strong drink” and “wine” to be ancient analgesics. Of course these are not administered with the intent to hasten death but to show compassion by managing suffering.

    Out of curiosity, was the girl offered focused radiation treatments and dexamethasone in an attempt to shrink the tumors?

    Thanks again for the thoughtful post.

    1. Christopher,
      Thank you for your comments. Your last questions is interesting. No, dexamethasone was not tried. (For the non medical reader, dexamethasone is a potent corticosteriod which usually effectively decreases swelling that can result from the body reacting to a growing tumor. By reducing swelling there can be an improvement in function.) In retrospect, it would have been interesting and possibly helpful to have tried some. I find myself asking why it was not tried, In spite of the fact that over the the latter weeks of illness a number of doctors, including a cancer specialist, were involved. I wonder if it may be we, as caregivers in our current culture, have become so focused on dying, that we risk missing life sustaining compassion? Narcotics were used to relieve what appeared to be discomfort in the last weeks.

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