I've heard it said a person will want to die, based on how they lived. However, my experiences have shown me that not all private people want to die alone and not all social butterflies want to die with half the village in the room, and that predicting how someone will want to die is a great big waste of time. 

Our focus up until being on hospice has not been to keep them comfortable, it has been to keep them alive. 

It can feel like an abrupt and rude 'about face' to shift from treatment to comfort. And sometimes the change in medications can feel alarming to a family.

Comfort medicines are medications designed to be used to help patients be relaxed and pain free. Comfort meds are designed, and the use of them guided by hospice nurses, to keep the person doing the dying in a whatever state of relaxation and comfort they have indicated they want to be kept in. Again, let's have those conversations before we need be guessing at how comfortable someone else would want to be based on what we would want.

If you are not the hospice nurse or the MPOA for the person dying you have to be very, very careful about suggesting or guiding anyone in the use of medications. You can certainly address what you see with those who are there to dispense medications but it is illegal for you to practice medicine if we are not licensed to do so.

Speaking to someone when you are going to touch them is important, as well as telling them what is going on. The one point I will make here is that it is important to trust that the person is getting the information you are giving them. Please do not try to illicit a response from someone who is basically non-responsive or asleep. It isn’t necessary that we try to wake them up.

Knowledge and guidance can make the difference between a frightening, unpleasant memory or a comfortable, beautiful memory of someone’s death. We don’t want to try to take away the sadness but we can certainly help neutralize the fear that many people bring to the bedside of someone who is dying. 

It is not necessary to point out to family members all the reasons they should be happy when one they love is dying or has just died. It’s one of the things many people will do in an attempt to make those left behind “feel better”. And that need is usually being sourced from a discomfort within ourselves with being in the presence of deep grief or sorrow.

I take great exception to thinking that we, as the doula’s, midwives, volunteers or even an immediate family member, have the right to tell someone how to die. My experiences in the final moment of many lives have not led me to think they need us to tell them anything. And for us to gather everyone around the bed and take the dying person’s hand and say “You are dying. This is what it feels like to die.” simply feels beyond inappropriate. I agree that soft words of loving support are always appropriate. Saying to a person who is dying, “You are so beautiful. You are doing such a great job. Thank you for allowing me to be in your life. Thank you for being in my life. I will never forget you.” Those kinds of things can be helpful and comforting. But I simply do not believe that I would want anyone to try to tell me how to die and I would be mad as heck if someone did it to one of my family members. I think it’s good to assure loved ones who are dying that you’ll be OK. Not in a way that makes them feel like you’re trying to rush them along but in a reassuring kind of way that says you go on and go when it’s time and we’ll see you when we get there. 

Touching someone who is actively dying can be comforting; cupping the ankles of someone lying in bed, slipping your hand beneath one of theirs, softly stroking their hair can be comforting if you know ahead of time that they liked this kind of touch.

When breathing stops, we wait. Many dying people have what is called Apnic breathing, long or seemingly long pauses between breaths. This can be a tricky time and can even freak some people out if the dying person stops breathing and everyone gathers around the bed and 60 seconds later they take a huge gulp of air, sometimes people jump out of their skins. So helping to prepare a family for that possibility is important and generally hospice nurses will have done this. 

We like to remind families, frequently, that the moment of death is not an emergency. Nothing needs to happen immediately. This can be some of the most amazing time of someone’s dying, after they have actually died. It is a time of ritual and ceremony and can be talked about among family members long before the actual moment. But again, all deaths are unique to the person doing the dying and to the one’s being left behind.

If you find yourself attending an expected death and hospice is not involved, there are certainly things that need to be done. If the person who dies is a hospice patient, all that needs to happen, if it hasn’t already happened is that hospice be called. The only truly “expected deaths” in the eyes of the law are ones where hospice is involved, or if someone is in a nursing home or a hospital. And not all nursing home and hospital deaths are necessarily expected deaths. If someone is at home and dies and hospice is not involved it will not be considered an expected death and the protocol will be different. The coroner needs to be notified of ALL deaths. If hospice notifies them, they will have a face sheet already on hand and will clear the notifying party to proceed without the coroner’s office needing to get involved, unless the notifying party has reason to believe there was foul play. In which case the coroner will come. Otherwise they don’t come out unless they are handling the removal. We don’t need to get into all the details about this except that sometimes people don’t think about it. I’m amazed how many people think that because they have stated their wish to be cremated, they’ve taken care of business and they haven’t.  There are papers to fill out and of course money to change hands. If your loved one, or you yourself, desire donating your body to science, this musthappen before death occurs. No money changes hands, but paperwork absolutely needs to be filled out and the person doing the dying is the one that needs to request their body be donated. 

OK, so death has come. And there is no sense of emergency. Noting the time of death is helpful because you will be asked for it. Some families will not have wanted to discuss this moment before it comes. If hospice is part of the care team, they will have made an effort to find the gentlest, most gracious way to talk about what happens at the time of death. In the immediate moment after death and for some time thereafter the loved ones who are present may not be able to make decisions about anything at all. If there has been at least some discussion about that moment, before it happens, it can be helpful. But if that hasn’t happened, then we deal with what we have. Always, we deal with what we have. And we do it slowly and patiently and with every attempt made to honor each individual’s need for time to process the death and time to be with the body.

Bathing a person who has died is a sacred ritual. Allowing, inviting and guiding family members in how to participate can be beautiful. Often times, the women of the tribe will be the ones to perform this ceremony and depending on the family and the circumstances, it can actually be life altering and emotionally healing. It can be intimate and meaningful and deeply spiritual. If the person has a catheter, having a clinically trained person remove it is more helpful than trying to figure it out but I have been walked through it on the phone by a skilled clinician and it was fine. Or it can stay in place until someone is there who knows how to remove it. If there is oxygen still in use, turn it off. Removing the tubing from the nose is allowed.

Say very little. If spoken to, answer, but otherwise just move slowly and with loving intention. Watch and listen with respect. As unobtrusively as possible, begin to remove the evidence of illness. Do not do anything with medications except gather them all to one spot. There are strict regulations for the disposal of drugs and a trained professional will do that. Begin very quietly to tidy up the area. You might offer the opportunity to anyone present to spend some time alone with the body. You might ask if the family has thought about what they want their loved one to leave the house in. Maybe the one who departed actually left instructions on what they want to leave the house in; wouldn’t that be a novelty!

In hospice, we had certain things we liked to do and we had a fluid dance in how it happened. Personally, I love being included anytime the opportunity presents. There is something so beautiful about attending a death. The magic is in the details and each of us has little details we bring to the experience. Our focus at that time is easing the transition for family and closest loved ones and creating an environment of peace and beauty and reverence. When it is time for the body to leave the home, we would be there to assist the funeral home in doing that as graciously as possible and to offer guidance to the family about the process. Once the body is off the bed, remaking the bed, removing sheets and placing clean linens or a quilt or blanket on the bed, freshening everything and placing something on the pillow, and lowering lights can all help with that first moment when the loved ones re-enters the space where their beloved died. 

When we would first enter a hospice situation, eventual body removal was one of the things that would run through our minds. We are looking ahead and looking for ways to make it as easy on the family as we can. Sometimes we just know, that at the time of death, removal will be an issue so we know when we call the death in, we need to ask for additional help. The non-emergency number for fire departments is an incredible resource for helping to safely and graciously remove someone from a difficult area of their home. One thing we do know is that once the funeral home is called and once they arrive, they do not like to wait. 

So we will always wait until the family says they are ready for their loved one to leave before we call the funeral home. 

I hope some of this information has been helpful. If you've been listening to this because you have been thinking about how to be of service to those who are dying, if you think you want to do this kind of work, these words are probably a good beginning. When we sit beside a dying person; or when we hold the daughter huddled on the floor as she wails because her mom just died; or we sit in the presence of the young mom who’s son died sometime during the night in her arms; when we companion the dying and hold space for the survival of the living; we are in a place of profound vulnerability. Nestled somewhere between confidence and fear, vulnerability is that state of exposure that makes us most human. When we can honor, embrace and love our own vulnerability we nourish and touch the primal source of our truest power; that Divine connection to all that is great, all that is good, all that is meaningful and all that truly matters.