Breaking Through the Fear

Growing together through chronic or teminal illness
By Jacob Teitelbaum, MD

One of the most devastating parts of having a chronic or terminal illness is the isolation that occurs because of people's fear of death and dying. This fear creates a "conspiracy of silence" around the patient that can be very uncomfortable. It also makes it impossible for them to speak about feelings that are very important to them.

 

If someone is dying—even if the disease progression may not take your loved-one’s life for quite a while—bring up the issue of death. If the person is not ready to speak about this, then you can let the issue rest.

 

More often than not, however, broaching the issue leads to an incredible sense of relief and an outpouring of feelings that have been bottled up for quite a while. Talk about any fears surrounding death and dying. Also, talk about your spiritual beliefs as they relate to an afterlife. My own personal belief, which developed from both my life experiences and having grown up in a seminary, is that there is no hell—only heaven. In thinking about it, the patient may be reassured by the following realization: What loving parent would judge their child and send them to eternal damnation? I very much doubt that God is a worse parent than we are.

 

For those who do not hold a spiritual belief, talking about how we continue to live through our children, grandchildren, and the things we have done and created can also be very comforting. Simply having the topic out in the open can be incredibly healing and helpful. It is also critical to talk about “end-of-life” care.

 

Doctors have sometimes been taught that death is the enemy and will literally torture people to make sure that the patient does not die “on their shift.” If things normally done to people in an intensive care unit were unwillingly done to somebody on the street, it would be a front-page headline all over the world, and seen as a hideous act. Yet, we simply view it as normal medical care.

 

There is a time for such aggressive measures—when used to prolong life. When used to prolong death, however, I believe it is simply unnecessary torture. When approaching the issue of death, ask the patient if they want CPR when the time comes that their body is ready to pass on, and there is nothing more that can be done to benefit them. This time will eventually come to us all, but can be approached as if it is off in the future.

 

It usually becomes clear when we are prolonging death versus prolonging life. The period where this is a "gray area" is usually fairly short, or even absent. You may ask if the person would like to sign a living will stating that CPR should not be given once death is imminent.

 

In cases that are clearly terminal, it is important to be aware of another option, as well. An order preventing CPR is only a first step. A time comes when it is important to let go, let the patient die gracefully, and not force the body to find a more painful way to make its transition. At this juncture, it is reasonable to ask the patient if they would like what is called "comfort measures only." This means that everything will be done to keep the patient comfortable but nothing will be given (e.g. antibiotics and, if the patient wants, even IV fluids) to prolong the dying process. Coma, and the dehydration that comes with it, has for millennia allowed the body a graceful and comfortable way to make its exit. I strongly recommend that we use our heavy technology to prolong life—not to prolong death and suffering.

 

Through this conversation, the patient is empowered to make the final decision. Prepare these decisions in writing, or discuss it with the doctor and other family members, so that the patient's wishes are respected if they slip into coma. Have the doctor confirm that they will respect these wishes, and have a prescription written for the rescue squad (or other doctors) in case your doctor is not on call at the time.

 

Coming to this conclusion together and giving the patient your permission to die when the time comes is a great gift you can bestow. Many times, patients have pleaded with me to talk to their families, to convince the families to let go and let them die in peace.

 

The dying process does not have to be a terrible thing. Indeed it can be a very sweet time that helps to deepen your relationship and be a special part of the person's life. This occurs when patients are comfortable and get to have the people they love around them. For most, this is much more important than being tormented by high-tech marvels in their final hours.

 

One final thing to remember about the dying process: We routinely see family members (especially those who deserve to be sainted for the loving care they have given) torment themselves when their loved one dies, struggling with irrational guilt about what more they could have done. If you find this happening, be gentle with yourself and simply allow yourself to let go of the guilt.

 

The best advice I can give you throughout this whole process is to find a centered place, then check in with what feels good to you. When something feels good, I find that it is my psyche/soul's way of guiding me so I can be true to myself. Keep your attention centered on what feels good and only act based upon this—you'll be amazed at what feels good in this setting! In this way, your loved one’s end-of-life experience can be a blessing, bringing you, together, into a closer, happier, and more loving place.