Let’s Talk About Death, Baby
or How I Fell in Love with Death and Dying
About six months ago I made a life change. It happened out of the blue, my frustration combined with luck to create a new opportunity for me. I started working for a Hospice company and I spend my days talking to people about death and dying. I love it.
At first it was a weird place to be. I had been working in senior care for three-ish years and death had become a brief part of my job. When the average age of the people you meet is over 90, a lot of people you meet are going to die. Usually later rather than sooner, but it still happens.
In my current job I am meeting with people who have been given less than six months to live. This changes your perspective on just about everything. You stop worrying about the little things and focus on making the time you have left as amazing as possible. Here are some things I have learned in my six months.
Death is Scary
But it doesn’t have to be. The fear comes from the lack of conversations about death. We don’t talk about it. This makes the idea of dying so much scarier for the person who is dying, because they have no one to talk to about it. Dying is a BIG DEAL and we don’t talk about it.
The trick of it is that no one wants to die, but we can’t stop it from happening. We would rather talk about anything else then death and dying. In fact we don’t want to talk about anything that might have anything to do with death and dying.
But death is a part of life. Everything has a beginning and an ending. We celebrate the beginning of life every single year, but death is talked about in hushed tones and, typically, only when it happens.
The only way to fix this is to talk about it directly. Don’t talk about “passing away” or “going to a better place” or whatever method of not saying “hey you’re dying” you can think of. It will be difficult, but it will make the conversation more honest.
Lean on the people in your life when you are dealing with death and dying. Pretty much everyone in the world has been through something similar and can provide you support.
Hospice is Underutilized
In 2015 30% of medicare patients enrolled in Hospice, were on service for less than 7 days. That is 7 days out of the 6 month benefit. This fact blew my mind when I first read it. Now that I have been working in hospice I can see why: We don’t talk about death, so we don’t know what is available. And we don’t want to give up on life because we are scared.
Hospice is amazing. The entire focus is quality over quantity of life. With medical interventions we can keep people alive when in the past they would have died. Some of those interventions are great, they save people’s lives, but at what cost to the person humanity?
Doctors are amazing. They are able to do things that prolong life, but they don’t like to give up. They have been trained to save people and admitting that they can’t is hard. Doctors will always look for the next treatment, and the next. Until the patient has died or the patient/family tells them to stop.
One of the hardest parts of my job is when the patient wants hospice but doesn’t want to sign on because they don’t want to disappoint their family. Usually all that needs to happen is for the family to have an open and honest conversation, but that isn’t simple to facilitate.
This is the part of my job that makes me a little crazy. Since we don’t like to talk about death, we super don’t want to ask questions about it. But not knowing doesn’t make death go away. So ask lots of questions. Here are a couple to get you started:
- What is the dying process going to look like? This is an important question because every disease process leads to death in a different way. Towards the end it all starts to be similar, but knowing what the process looks like will help you adjust your thinking.
- What should I look for? This is especially important if you are the primary caregiver. You will then know what to look at for as the process happens. This knowledge will make you less fearful, because you won’t be surprised. And you not being fearful will help the dying person be less fearful.
It is Not About You
Unless you are the person who is dying, then the death is not about you. You loved one’s death will have a huge effect on you, but at the moment the focus needs to be on them; on their wants and needs.
This means that if they choose to stop eating, let them. Don’t force them to eat or make them feel guilty because they don’t. A lot of times their gastro system is shutting down and they can’t effectively digest food. Eating can lead them to get aspiration pneumonia, leading to more pain and suffering.
Another part of this, that I see fairly often, is communication. You may think that your loved one doesn’t want all the details, but unless they have said that, don’t withhold information from them. They are living with the disease so they should have all the facts.
The final piece thing to remember is that them dying is not your fault. I’ll say it again: Them dying is not your fault. This can be a little hard to wrap your head around because it is so easy to do. The disease is what is killing them and nothing else.
With the ever present screens in our lives it is easy to disappear from what is happening in the world. Especially if what is happening is hard to deal with in the best of circumstances.
When you are with someone who has a terminal diagnosis, put your phone away. The time that you are spending with them is precious, not just for you but for them as well. You will never regret not seeing the latest cute cat photo, but you will regret the time you could have spent with a loved one.
Time spent with people as they near end of life is amazing. Dying people are funny, mean, sad, happy, goofy, and every other descriptor of a person you can imagine. They have not changed, their circumstance has. Cherish the time you have with them.
This last section is for both sides of death. If you need someone to talk to, reach out to someone. Their are grief support groups, bereavement programs are part of most Hospice programs, and other people in your life want to help you. Let them.
It is hard to ask for help. But if there is one time in your life that you need help it is when you are dealing with the death of someone close to you. But you have to ask for the help, which means communicating with people.
If you need to, reach out to me. I am more than happy to listen and help in anyway I can. Don’t go through this alone.