Doula for the Dying

I belong to Hospice Community Forum and just had a discussion with an “11th hour volunteer.” An 11th hour volunteer is a person who sits at the bedside of the dying, usually when death is imminent or within 24 hours or so. They are very much akin to a death doula.

Well, he brought up the issue of creating a peaceful environment, which can be especially challenging in a nursing home. To all the nursing homes out there, most of you do a great job … but, there are some situations that nobody should have to endure, especially when he is dying.

‘Keeping the peace’ in the room of a dying person is paramount. I have found that there is a certain level of noise that is acceptable in any public place and nursing homes have theirs as well; and, it is far different than what should be happening at a death bed vigil. I have had a lot of luck asking for the roommate of the dying to be moved if they are loud, need loud TV, or in anyway disturbing to the dying and their family. If the roommate is not willing to change their behavior or go to another room for the interim, the nursing homes I have dealt with have been willing to move the dying and their family to a private room.

Along with physical comfort, environment is so much a part of a peaceful passing. That’s why we are there–our presence blending with theirs. In a perfect world we would all get to have loving, peaceful surroundings. What brings me joy in this work is that I am part of creating that. It may not be what I wish it was, but I know that I’m part of the solution in bringing as much calm as can be.

Sometimes a nursing home may need a little nudge in peacefulness. I have had luck putting up a sign on the door to knock softly and keep the lights off. It is amazing how much a little sign will do. Also the family can inform the charge nurse that they want nobody coming in the room unless to provide peri care or room cleaning. If that is not enough, ask for a doctor’s order for this. Ask the staff to help you. Ask each person you see to be proactive in helping you give your loved one a peaceful death. Look them in the eye and ask. Most of them will love to be part of caring in this way.

So now the roommate is quiet or you are in a room by yourself, but the lights flashing from the TV may be disturbing depending on the person. Would you want the news on if you were laying there dying? or The Price is Right? or The Jerry Springer Show? I’m serious. Remember that hearing is the last sense to go and your loved one is being affected by all the energy in the room, whether it be flashing lights, hearing, smells or emotion.

Some other things: make sure soiled bed pads and briefs are out of the room immediately; apply your loved one’s favorite scent on them or in the room somewhere; play favorite music; play books on tape. My suggestion is to have some type of soft sounds–the ocean, forest or river noise–something to drown out the noise of the facility. It won’t do it entirely of course, but it may help.

Please remember that the nursing home is it’s own little world and anything that you want to be different, you are going to have to be very proactive about getting. Most people who work in the nursing home want to please you and care for your loved one too. Very caring people are drawn into this line of work and are very deeply affected when someone they have cared for is dying.

If you have experiences in how your loved one was able to have a peaceful death in the nursing home, please let me know. What did they do or you do to make it so?

Most of us have heard this term. It is the noisy rattling sound that a dying person makes that can be very disturbing to hear.

Death rattle happens when secretions gather in the throat because the person is too weak to swallow. The gurgling sound happens when air passes through the secretions upon exhale.  This doesn't necessarily mean the person is having trouble breathing.

There are things we can do to minimize this. There are standard medications to use that dry these secretions. Repositioning the person is very effective. Sometimes in repositioning, secretions will come out of the nose or pool in the mouth. Suctioning them at this point will provide comfort and relief for the family.
It is distressing often for the family to hear this. People fear the person is drowning or will choke to death. This is not so.

It is one of the final things that happens. Know that when you hear this, death is usually imminent, but this phenomenon can also happen days before death. It does not always mean within hours; just know that death is not far off.

As a person nears the end of life, there are some very basic similarities that may be seen which cross the type of illness or 'reason' for dying. Below is a list of some of these behaviors. Usually, the closer to death the more pronounced the symptom. Simple to complicated, easy to difficult, know there is always something that can be done to relieve any suffering that may accompany any of the following:

• Lack of energy
• physical weakness
• loss of interest in things that are important
• withdrawal from loved ones
• increased sleepiness
• gazing or staring, as if right through you
• confusion
• restlessness
• loss of appetite
• difficulty swallowing
• incontinence
• temperature fluctuations
• loss of color
• breathing changes
• increased pain or beginning of generalized pain

Dying is a process. This final stage of living may come on swiftly or slowly, but however long it takes, be it days, weeks or months, it is usually predictable. Not everyone will have all the manifestations of course, as each person's death is as unique as a fingerprint.

What I do hear most of the time is the question, "why is this taking so long?" It just does ... unless it doesn't. There are definitely no absolutes regarding any of this other than our heart will stop beating and we all will take our last breath someday. Until then, enjoy!