New Rules Of End Of Life Care: What Happens When We Die

If you don’t understand what happens to our bodies when we die, including our mental, emotional, and soul realms, what you do to “care” for the person you love may do more harm than good.  Recognizing that death is not a medical event and deepening our understanding of death’s natural progression is one of the most important things any of us can do to respect dying loved ones, their families, and the community as a whole.

5 Key Things To Understand About Dying

As hospice care providers, we appreciate the dedicated work of Babara Karnes R.N., and we’ve recognized her work in previous posts.  Karnes has a beautiful, short video and a body of easy-to-access DVDs, booklets, and other literature you can access from your local hospice agency or online. All are affordable and are immensely reassuring resources for families of loved ones who are at the end of their physical lives. Here are 5 key things to understand about dying, otherwise called The New Rules of End of Life Care.

Dying is not a medical event

Every living thing dies, including humans – and ourselves. This tells us that death isn’t a medical event; it’s a natural part of the life cycle. Some of the events or causes leading up to death may have been medical, for example, health conditions or diseases that may or may not have a cure or treatment options that suspend physical life with the disease. However, once the scales have tipped from living with the disease to dying from the disease, it’s time to chart a new course of action (or non-action) in the form of a conscientious end-of-life plan.  The same holds for those who are dying due to old age; recognizing the signs that someone in their mid-80s or older is dying allows us to shift into the service supporting them as their body begins to let go of life. If families cannot recognize that death is not a medical event but, as Karnes reminds us, “a communal event” they continue pursuing medical interventions, treatments, and hopeless curative attempts that often do more harm than good. Treating death as “clinical” or “the worst thing” rather than Precious Time means the potential for far more physical, mental, and emotional pain, discomfort, anxiety, and anguish for your loved one and everyone else. The antidote to that dismal reality is recognizing that an individual is dying, and then honoring this sacred rite of passage for them and the community.

Lack of appetite is okay and 100% natural during end of life care

“Food is what holds us in our body. Food is the anchor that…gives us grounding, and if the body’s preparing to die – it doesn’t want the food or the grounding. It’s trying to let go.” If someone dies from old age, their appetite begins to wane years and months before they actually die. Likewise, when people die from a more specific illness, disease, or syndrome, their appetite may wane or disappear more abruptly. Either way, in addition to helping the body let go, a lack of appetite or interest in foods also indicates the body can no longer process them. If that’s the case, insistence on eating or wheedling and getting someone with no appetite to eat can lead to unnecessary medical interventions or painful treatments due to intestinal blockages or severe constipation/diarrhea.  It is not easy for loved ones to honor a dying person’s wish to not eat because food is such a source of comfort, a way to show love, and a way to pull the community together. However, one of the most loving things you can do is honor that. Offer things they love, or simple broths, liquids, etc., but never force or coerce.  Take the energy and intentions around “forced eating” and put it into the more meaningful practice of preparing for their death. Honoring their wishes in the appetite arena increases their ability to die more comfortably.

Death is not painful

That is a natural segue to the next rule for loving end of life care: death is not painful.  “The person is so removed from their physical body that they don’t experience it [pain] the same way that we who have a firm grip on this planet feel it.” Some things may cause pain, typically related to the pain associated with whatever condition they may be dying from, or from being bedbound, but these are fixable using reasonable comfort management strategies. End of life pain management should correlate with pain levels related to the disease and its progression – not that a person is dying. Beware of the tendency to administer morphine for pain without expert recommendations. Most clients are more interested in being slightly uncomfortable or willing to experience tolerable amounts of pain/discomfort than being drugged up and unable to think, process, or communicate clearly with those present. Instead, treat disease-oriented pain until they die, but never more than they need. Let your hospice care team be your guide in pain management and comfort care, ensuring you’re allowing room for the loved one to die with as much clarity as possible.

Withdrawal is a natural part of the dying process

Withdrawal, indicated by more sleep, quietness, nonresponsiveness, etc., is all part of the dying process. As we die, our bodies slow and shut down so that our minds and souls can let go, move inward, and shift out of our physical bodies. Just as you don’t wake a sleeping baby, you do not disturb a sleeping or withdrawn dying person unless absolutely necessary. Unless the dying person indicates otherwise, it’s fine to hold their hand, to lie in bed with them, or to let their dog/cat curl comfortably at their side. The closer they come to their last moments, the more withdrawn they typically become. Your hospice team is there to remind you of what is normal, so you can be more attentive to what is happening and less in denial or the dissociation of trying to fix and control everything.

Your presence is the greatest gift you can give a dying person

Being present is one of the greatest gifts you can give to someone who is dying. The witnessing, the holding, the touch, the love – that communal companionship and presence are more important than anything else. Once someone is actively dying, caregiving should shift from “trying, trying, trying” to an attentive presence. In that way, acknowledging, surrendering to, and respecting that someone is dying can energetically restore caregivers so they can be present – rather than working as hard – during these last precious weeks, days, and hours. Words are less meaningful at this point as dying people may hear them, but words are less meaningful because they are disengaging from the physical realm and retreating inward.  If communicating complicated, painful, or challenging messages, keep them quiet, simple, and short. Less is more, yet less can mean everything to you and your loved one. Remember, this moment only comes once, and you can never revisit it. A reverence for the deathbed and its natural progression is something you’ll never regret. Forced business, avoidance, or forcing your agenda on the dying can haunt you for the rest of your life.

We Support Your Family With End Of Life Care

“When we’re at the bedside of a person who is dying, it is all about the community – about the togetherness – not about the medical stuff going on.” We’ll end as we began. Dying is not a medical event; it is a community and cultural event – as much as an individual process – that honors the age-old rhythm of life, that begets death, that begets more life, and so on.  Hospice of the Golden Isles is honored to be there and support your family as you participate in the natural waning of your loved one’s life. Contact us to learn more about our services and how we can provide comfort, assistance, and compassionate expertise for you and your family.