What if I told you that simply talking to your loved ones about death could change their lives for the better? That you could make a positive impact on others at the end of their lives? Millennials, it’s our time to start having these important conversations.
Whether you are beginning a new career, having children, or traveling the world, mortality is ever-present. However, youth insulates us from practical thoughts of the inevitable end. Often, we (medical and non-medical professionals alike) hardly have productive thoughts about the end of our lives until we are faced with it.
And when we finally must deal with finality, grief hits us like an oncoming train.
While the death of a loved one is never going to be easy, preparing for it can alleviate some of the pain. By arming ourselves with knowledge about what a good death (and a good end of life) looks like, by learning how to navigate decision-making for our loved ones who can’t make them themselves, we can assist in minimizing the misery of their passing and our grieving.
So, let’s chat about the basics.
1. Where to Start?
Beginning to talk about death is a challenge itself. Why? Many of us have either never dealt with death personally nor have had open conversations about death ever.
And I’m not talking about just millennials, I’m talking about most Americans of all ages. I personally have encountered many elderly people who avoided talking about the realities of death until they were at the end of a long, painful battle with illness.
A 2009/2010 national survey (for people ages 18 and up) found that only 26.3% of participants had an advance directive. While it makes sense that younger respondents probably wouldn’t have an advance directive, 31.7% of participants over 55 did not have one. The main reason respondents did not have an advance directive was that they didn’t know about them – the other typical reason was that they felt their family knew their end-of-life wishes. Now granted, surveys have limitations and biases, but it does still highlight that may be a lack of education regarding end-of-life issues – especially, according to this same survey, for those non-white, lower income and male.
We will talk more about advance directives later on. I want to back up for a second and break down some of the other components of death and dying.
Millennials, help decrease unnecessary turmoil by first educating yourself, then having frank discussions with your loved ones before illness strikes.
Start by looking at your own life:
- What do you know about death and dying?
- Do you know anyone personally who passed away?
- If you have known multiple people who have died, how were they similar and different?
- How did these events impact you?
Examine how death may have or have not played a role in your life. Maybe you don’t know anyone who has died, or maybe you had a family member die when you were so young that you hardly remember. By first assessing where your knowledge gaps are, you can start researching appropriately.
Next, look at your friends/family. Do you know someone at the end of their life? If you aren’t sure (and that’s okay, by the way), ask yourself:
- Does anyone in your family have a chronic illness? Like heart disease, COPD, dementia, or cancer?
- How are the elders in your life? Physically/mentally/emotionally? Have there been any changes to their health status recently?
- Do you know anyone who is caregiving for another family member?
While “yes” to any of these questions is not indicative of a dying family member, they may be warning signs.
My suggestion is to do some quick reading. I have found the book Being Mortal by Dr. Atul Gawande to be extremely entertaining, educational, and heart-wrenching. I cannot recommend it enough. It details how we, in healthcare, have often failed the dying by intervening in inappropriate ways that have prolonged suffering instead of minimizing it.
It’s not necessary for you to become an expert to be of use during a family death. However, it is helpful to become comfortable talking about it in a positive way. That brings me to my next point.
2. Don’t Be Afraid to Say the Word
Okay, this is cheesy, but Dumbledore had a point when he said,
“Fear of a name increases fear of the thing itself.”
J.K. Rowling, Harry Potter and the Sorcerer’s Stone
Before I worked in hospice, I rarely ever used the word die to describe a person who was no longer living. However, my boss demanded the nurses reframe our language when talking about death. That took me a minute. I live in a passive, Midwest community where die is hardly used in the context of literal death. (Though we do delight in saying I’m dead emphatically when something is surprising or nonsensical.)
But when someone really dies, we have difficulty expressing it concretely. Instead, we say a person passed away/moved on/is at peace. Rarely, do we use the word itself. (If you’re curious, Wikipedia has devoted an entire webpage to euphemisms for death, some are quite funny!)
At first, saying die/death/dead is going to feel uncomfortable like it was for me, but it’s an important linguistic difference. For example, not using the correct word can create ambiguity. By trying to soften the blow with euphemisms, you may unintentionally cause more pain for another who, for a variety of reasons (i.e. grief or mental disability), may have trouble grasping the death of a loved one – even when that person is on hospice.
I’m not saying you have to always shift all your language away from euphemisms. Every patient is individual. Actually, in initial discussions about death and dying, it may be inappropriate or jarring to use the word die.
But I do think it is worthwhile to practice using these words. To say what you mean.
3. The Dying Body
Watching a loved one actively die (the final few days of life) is one of the most challenging parts of the end-of-life process for family members. It doesn’t look like most Hollywood deaths (famous last words, moments later head tilts to the side, eyes open).
Instead, you might sit vigil for hours, even days. Your loved one may be completely unconscious. There’s no way to describe the sadness of witnessing someone once so strong, be completely immobile. It sucks.
But I want to arm you with some comforting information.
Dying is a natural process.
I know that sounds obvious, but at the moment it’s easy to lose sight of this fact. We aren’t used to the end, we are used to fighting for life – not allowing the inevitable to transpire.
Dying can look uncomfortable or painful. But hospice and palliative personnel are experts in understanding non-verbal pain – they know what to look for to alleviate the suffering of your loved ones.
So, what does dying look like?
(If this is too difficult to read about right now, please skip to the next section on advance directives.)
Our bodies are programmed to survive until the processes in place stop working. There are a lot of complex physiological backups in place that help keep us alive even when one system declines. However, eventually all of our pieces and parts cease to work, and we die.
When a person is actively dying, it means that they are undergoing the process of shutting down completely. We, as hospice professionals, can’t predict the exact symptoms of every death, but we know it will look different than a normal-functioning body.
Vital signs (temperature, blood pressure, weight, pulse, and respirations per minute) will likely be wacky. If we were talking about a healthy individual, these vital signs would be considered abnormal. But at end of life, unusual vital signs are normal and part of the natural process of dying. And if these vital signs indicate distress, hospice nurses know how to remedy it.
In addition, those at the end of life may no longer desire food or water (or want very little), as the body stops efficiently processing them. Unfortunately, if forced to eat or drink, the patient may aspirate, meaning fluids become breathed into the lungs instead of the stomach. This can lead to increased rattling at the very end of life, increased shortness of breath, and discomfort.
Now, I don’t want to confuse this with purposely not feeding patients who are, indeed hungry – that would be abuse. Hospice philosophy suggests that a dying person should be able to eat/drink whatever they please, as long as they can tolerate it (granted, we as RN’s need physician orders to be able to enact such a policy). If the patient loses the capacity to swallow, nurses will use mouth swabs to ensure lips and mouth are well moistened, preventing that thirsty sensation. If the patient no longer desires anything, it is the job of hospice professionals to help the family understand why that refusal should be respected.
There are also several normal mental/spiritual symptoms associated with the dying process. Be mindful that they too can be minimized by good hospice/palliative professionals and medication. A dying person may experience:
- Hallucinations (usually of already dead loved ones)
In short, a dying body is very different from a normal-functioning one in many ways. Therefore, our goals of care must shift – from curative care to comfort care. We might not be able to keep vital signs “within normal range.” But we can reduce suffering for patients and families.
However, this requires some participation on your part. Let’s talk about advance directives.
4. Advance Directives
Advance directives are documents that allow you to make decisions for yourself after you no longer can (due to severe illness). You can dictate exactly what you want and what you don’t want in the event that something catastrophic happens to you.
This can relate to medical/non-medical interventions, organ donation, and after-death religious rituals. They are state dependent and come in a variety of forms. Click here for more detailed information.
You can also make a trusted person your durable power of attorney (or healthcare proxy). Upon activation of your advance directive, in the event that you are no longer competent to make decisions for yourself, your appointed power of attorney will make decisions on your behalf.
Having your wishes in a written document protects you. And you can make changes to it anytime! However, this document is only valid if the writer was competent and not coerced during writing it. So, if you have a family member with a recent cognitive change, make sure they receive this document ASAP.
Also, remember earlier when I talked about the national survey regarding advance directives? How many did not have one because their family already knew their wishes?
Well, even if you have talked to your family about, say, your end-of-life wishes or your views regarding ventilation in an event of an accident, it is still so important to get these details in writing. Why? These conversations might be:
- Reflecting outdated wishes
- Warped due to memory and time
- Contradictory to what may have taken place in different conversations with other family members
Even if it isn’t written on a legal document – write down your wishes somewhere. Then tell someone about them.
Otherwise, in the midst of crisis, in a fog of guilt and grief, family members will have a difficult time deciding what to do to uphold your desires.
[Note for LGBTQ folks: As policy regarding marriage is subject to change under the current administration, it is very important that you are clear in your advance directive. If you want your partner or spouse to be your durable power of attorney, you may want to seek legal counsel to ensure your advance directive is upheld.]
Do you know someone who might need to fill out an advance directive? You can download your state’s document. It dictates who can and can’t sign it to make the document legal.
If you need help filling it out, many communities have classes to assist you. Do a quick Google search to see if anyone in your area is teaching advance directive classes.
Still not convinced? Watch this video from ZDoggMD. It goes into graphic detail about code blues and heroic, life-saving efforts. It sounds terrifying. (Note: code status changes to do not resuscitate are a separate document and usually only for very ill patients.)
Having an advance directive, however, is only part of what needs to happen to ensure your end-of-life wishes are fulfilled. In his book, Dr. Gawande talks about how we need to have many conversations about end-of-life wishes as well. He says that if a durable power of attorney has to make difficult choices for their loved one without knowing their wishes, they may feel very guilty about having made the “wrong” decision.
Not knowing your loved one’s wishes may increase their suffering. And the guilt can delay your grief healing.
That’s why denying end-of-life discussion because it is challenging ends up being more difficult for you and dying your loved one.
5. Having the Talk
Millennials, now that you understand the importance of talking to your loved ones about their death and dying wishes, and you have a little background information regarding this subject, you must actually have a conversation.
This sounds scary, right?
It is going to take some courage to begin this discussion, but remember – it would be worse illness or disaster struck, and you hadn’t had them.
There’s no easy way to begin these conversations, and there might be some times where you muddle through it uncomfortably. This is okay.
If you and your loved ones are currently healthy, without chronic or acute illness, these conversations might be easier to have. Explore different topics like:
- Who would you want to be your durable power of attorney? Any backups?
- Would you want to be on a ventilator long-term if there was no improvement to your health condition?
- Would you like to die at home if possible?
- What are your biggest fears regarding death and dying?
- Would you like to be buried or cremated? What kind of funeral would you want?
- Do you want to donate your organs after death?
Whatever you decide – write it down.
However, if you have a family member who is contemplating hospice or who is elderly with several chronic illnesses, these conversations are likely going to be more difficult. They aren’t rooted in the hypothetical – but in the future. Therefore, these discussions can be clouded in grief and fear. But by having them, some of this turmoil will be alleviated.
Try using the above list in navigating these critical conversations.
6. Ultimately, It’s Not About You
It’s about the person who is dying.
I was drawn to hospice because I did not cope well with the death of my grandma, nor did I really understand that she was dying. For me, entering this profession was a way for me to work through my own grief and guilt after I misunderstood her diagnosis and death.
So, I can relate. I know that as a family you want to erase your loved one’s disease. I know that you want your loved one to undergo more treatments – more chemo and surgery. But there are times when this approach only leads to more pain, and the outcome remains the same.
Entering hospice does not mean giving up hope. Dr. Gawande councils family and dying patients to change their perspective.
It’s about fighting – not for a losing battle with chronic illness that may prolong suffering – but for a good day.
It’s about living your last days as you see fit with the ones you love.
Remember to step back. Take a breath.
Think: what do I want in my final days?
And how can you help your loved ones achieve their final wishes?
I hope this helps shed light on some basics regarding death and dying. The most important thing is to continue gathering information on your own and then having frank, meaningful conversations with your loved ones.
Comment below if this was helpful or if you have further suggestions.
(And please respect HIPAA.)