As a volunteer with the Zen Hospice Project, I have witnessed many families struggling with how to be during the last hours of a person's life. And I have wished for an easier way. Mostly, I have been struck by the lack of knowledge and the misconceptions that people have about the needs of a person approaching the very end of their life.
The truth is, being with a loved one during their last days, last hours of life can feel overwhelming. If you are lucky, you may have the support of a caring hospice team, in which case your will not feel so helpless. More often than not, you may be at home alone with family members who are as unfamiliar as you are with the territory of death and dying. Or you may end up standing by a hospital bed in what has to be the most unsuitable environment for a peaceful death, the critical care unit.
Almost always, being present for the dying person involves refraining from our habitual ways of caring:
1) Do not insist on feeding the person.
We are so used to equating caring with nurturing with food. In this case, we need to shift our view to make room for the reality of the dying one. As the body shuts down, the requirements for food progressively stop and it becomes important to not get in the way.
2) Do not give the person a drink.
As with food, the dying one's ability to take in liquids comes to a stop at some point, and it becomes important to not force water intake. You may try to drip a few drops of water from a spoon, or let them chew on ice chips if they can, or hydrate the tongue with a small sponge imbibed with water. You can also moisten the lips with a lip balm.
3) Do not resist pain medications.
Respect the hospice team's decision regarding which and how much pain medications to give. Your loved one's comfort is at stake. If it looks like your loved one is in pain still, signal it to the nurse in charge, and explore ways to maybe increase the medication.
4) Do not talk about the person as if they did not hear you.
Even if the person appears unresponsive or speaks in a way that does not to make sense, refrain from talking in the third person. Do not share information that could be upsetting or disrespectful.
5) Do not argue with the person.
In cases when the person becomes restless and wants to get out of bed, do not argue. Rather reassure them with a calm voice, and decrease any unnecessary stimulation that could increase the restlessness. Holding their hand, gently stroking them may also help lessen the agitation.
6) Do not fight with other family members.
More than once, I have seen family members fight over inheritance or ways that their loved one's death and dying should be handled, right by the bedside. While sometimes unavoidable, such quarrels create unnecessary distress for the dying person. If possible, be an advocate for the person and ask your family to have the discussion somewhere else.
7) Do not be surprised by the look and sound of death.
Instead be prepared for changes in the way the person breathes, interacts, feels and looks. The death rattle can be scary to hear if you have never witnessed it before. So is the sight of tearing, half open, glassy eyes, and the touch of a stiff body, cold as stone. You need to know that these are not painful but rather normal physical manifestations of near death.
8) Do not shake the person into coming back to life.
Several times I watched relatives try to shake their dying loved one out of the immobility of impending death. While you may be unable to accept the reality of her imminent passing, you need to respect the reality of her lying still, in peace.
9) Do not get agitated around the person.
One natural response to a loved one's dying is to become anxious and engage in various activities. This can be upsetting to the dying person and add to their distress. Better instead, is to calm yourself down, and bring gift of your quiet presence to your loved one. Remember this is not about doing for the person but rather being with him or her. Sit quietly, and tune in to your breath. Read them a favorite scripture, or poem. Hold their hand. Gently massage their feet...
10) Do not move the person back to the hospital.
The temptation is sometimes great to try yet one more round of chemotherapy, or another form of invasive intervention to keep the person alive. If you really care for your loved one, don't. The best way to love the person is to let her die naturally, and in peace.
I would like to leave you with two thoughts. The first is to accept what is happening and follow your loved one's lead. Let death be your teacher. This is not about doing but rather being present, not getting in the way of the dying process. The second is to take care of yourself. Get some sleep, eat something, meditate, pray, take a walk and share your grief with others.