Later Tipping Points

There are, of course, almost an infinite number of facets to consider regarding death and the dying process. Two tipping points are often the most difficult for caregivers to wrestle with.

Hydration and Nutrition

The first is the consideration of when feeding and hydrating the patient is no longer considered a comfort to the patient. It’s very difficult to stop feeding and hydrating someone. In our culture food equals love. It is how we celebrate most of life’s major and minor events. To think of not offering food or water seems unnatural, perhaps even harsh or inhumane. Whether the hospice patient is knowingly refusing food and water, or whether they are physically unable to take it in, we know the outcome will be the same. This may raise questions around the option of providing intravenous nutrition. Caregivers who are not familiar with the dying process generally have a hard time comprehending this fact, so it is explained to them that the body is no longer able to use the nutrition offered because it is now not functioning as it did when it was healthy. Often times forcing or strongly encouraging the patient to eat causes them distress and nausea. This makes eating not only unhelpful, it actually causes suffering. The same is true of hydration. The body simply doesn’t know what to do with the liquids taken in since often the kidneys are shutting down so the mechanism of ridding it’s self of fluid is “out of order.” Families and caregivers often understand this intellectually once it is explained, but emotionally it is much harder for them to accept. Hospice workers can offer information that will help walk the patient and caregivers through this normal change when the time comes.

Pain Medication and Cognition

No one wants to see the person they are caring for suffer from pain. However, the medication required to treat pain at the end of life may significantly affect the patient’s clarity of mind. We don’t want them to suffer and we do want them to be coherent. Once again, caregivers are faced with the difficult decision of how much pain medication they want the patient to have and weight it against how mentally present they want them to be. This difficult predicament is critical to how the patient will experience their death. We have seen patient families so conflicted over this second tipping point. Often there will come a point in the journey where the comfort of the patient must outweigh the family’s wishes to have their loved one present mentally. On rare occasions, we do see patients that stay fairly coherent to the end of their life, or near to the end, but it is the exception rather than the rule. The other point of misunderstanding is that the lay family member providing care often assumes that the changes they see related to the patient’s ability to be present is the result of the medication. This is actually relatively uncommon. The medication is increased in small increments. More often the patient is releasing to the progression of the disease and the natural journey toward death. It is most common to see the patient go to the “in between,” the place between life and death where they distance themselves in preparation for their death. This occurs naturally and has very little to do with the medication they may or may not be on to relieve their pain. This is the last tipping point decision as the patient travels away from the caregiving team to a space known only to them, but they leave behind a gift for the caregiver.

“The worst thing is not the sorrow or the loss or the heartbreak. It is to be encountered by death and not to be changed by the encounter.” – Richard John Neuhaus

Caregivers are rarely left unchanged by their encounter of supporting someone at the end of life.