Few people actually discuss death and dying with their families, even if you or someone in your family is approaching the end of their life. Although 92-95% of folks say that they’re willing or want to talk about end-of-life issues and 70% respond saying it is a good idea, only about 27-32% report following through. The reasons are many, but a few common ones include waiting for someone else to start the conversation, having mixed feelings, thinking it’s a bad idea, or being worried about upsetting their loved ones.
Despite these understandable concerns, it is an important conversation for all of us to have. While it is crucial to do this when faced with a terminal condition, it is just as important to have this discussion when you are well and thinking clearly. This is especially true during the COVID-19 pandemic when death is more likely to occur quickly and unexpectedly. The nature of the conversation will be very different when you are discussing the possibility of death compared to when you’re facing an impending death.
While death is inevitable for all of us, we may not be able to predict when it will happen — especially when we are young. This is why it is good to have the planning for death or disability talk when you are young and not anxious and/or overwhelmed about your condition. If you have the discussion before you are facing this critical situation, you will find this conversation to be much easier. It will also be more valuable with more opportunity for honest discussion, reflection, sharing, and planning. There could be time to work out any differences of opinion.
An early discussion is meant to anticipate a tragic event, but it is the best thing you can do for your family. It prevents them having to guess and/or argue over what you may have wanted when they are already devastated by your condition.
There are many good opportunities to think about and have these discussions.
The Respecting Your Wishes Section will go into detail about the various actions that can be taken, but there are many things you should consider when having this conversation.
In addition, these decisions are not set in stone and should be revised and updated on a regular basis.
The more difficult conversation, and the one the rest of this section will focus on, is the one you will have when quickly approaching the end of your life. At this time you may be depressed, in denial, frightened, confused, distracted, or otherwise unable to express your feelings and needs. Other thoughts and feelings that could intrude are that you may:
Despite all of this, having the conversion about your death is the crucial first step toward making the best of what remains of your life and maintaining some semblance of control. You should also have a conversation about what happens when you become unable to make decisions for yourself.
There is ample evidence to show there are many benefits from the conversation that make the end-of-life process easier for all. Aside from you knowing they will be aware of and understand your wishes, family and friends benefit by reducing guilt and depression through helping with the grieving process. Don’t try to ‘spare the children;’ it is just as important to include them in the process.
Healthcare professionals may break the news, but many are not as willing or able to discuss the specifics of planning for your death. Similarly, lawyers may know about advance directives, but it can be an uncomfortable experience for them as well. Your family may strive to be supportive, but they may be too overwhelmed to meet your needs. Clergy are also available for personal guidance and support.
As with most other aspects of your life, you are your own best advocate. You will likely be best able to coordinate all of the family and professionals who will be involved and get them to work together.
You may have already created your advance directives and named a healthcare proxy, but you will still need to cope with your prognosis and make plans and decisions unique to those with a terminal illness. While a few will be able to handle all of this, most of us will need help and that means having the conversation over and over again with multiple people. You may even write a list of who that will be.
You may have trouble with the reality of talking to many different people about what you are going through. There are many ways around this, but a couple of ideas include appointing a spokesman to speak to anyone that is not close family or friends or create your own website with the information. Organizations such as Caring Bridge and My Life Line (specific to cancer) help you set up your site.
Particularly helpful are specialists specifically trained and willing to discuss all aspects of your situation, including grief, advanced planning, supporting decisions, and types of comfort care toward the end of life. The conversation’s content may vary according to who you are talking to, such as family, clergy, friends, and/or co-workers. Medicare and most private health insurance policies now pay healthcare providers for advance care planning (ACP) conversations.
The quality of care that you receive will be most important, not the quantity. It will likely be more important to you that you are more comfortable rather than experiencing the discomfort of further treatment, unless you have an event you would like to survive long enough to see, such as a family member’s wedding.
Family and friends will be your primary support during this time. You need to be completely open and realistic with each other about everything concerning the end of life, especially your feelings and wishes. You or they may not be ready to do this right away, and you may need to wait for a better time to ask their permission to do so. You may need to ‘break the ice,’ which usually begins with a description of what you would like to go over and why. Everyone should listen and gently guide each other to effective communication.
These are general suggestions; only you know what will work best with your family.
Here are some important ways to help each other manage through this time in your life.
One of the most important things you can do is inform your family and friends about your specific wishes for future care should you become unable to express them. The Respecting Your Wishes Section will go into detail about how to accomplish this.
You must allow your family and friends to help you, even if you have always been the helper or are concerned it will be a burden on them.Ultimately, the family’s involvement will be best for all of you and may strengthen family bonds.
It is important to listen to and consider each other’s concerns and suggestions, even if you don’t agree on them.
Use the opportunity to strengthen yours and your family’s spirituality
Once on the subject, you should go into detail about what your wishes are and document them.
Healthcare providers will be the most likely ones to ‘break the news’ about your condition and in some cases provide some idea of how much time you may have left. That should include a preliminary discussion about end-of-life care, but it does not always happen. Many healthcare professionals have had little if any formal training in this and may feel unsure about how to start the conversation, what to say, and how to say it.
If it is not brought up by them, don’t be reluctant to bring it up yourself. Talk to them about your concerns and feelings, since they can provide additional emotional support for you and your family. As with your family and friends, you may need to wait for a better time to discuss this in detail, but don’t wait until you are too ill to have a meaningful discussion.
Your healthcare provider will usually be the person to arrange for further care and should be the one to oversee your healthcare team. There are many options for further care that may be appropriate for your situation, these may include:
It is important that your healthcare team is aware of your wishes about additional treatments, life-sustaining care, resuscitation, and whether you prefer to die at home. While 70% of folks would prefer to die at home, only 30-40% actually do. Unfortunately, many of those 60-70% who die in the hospital experience discomfort as well as ineffective and expensive care that is either not necessary or not wanted.
Go into any level of detail you would like. Be sure to include specific details about the practices of your culture or faith. Other considerations are similar to when you are getting any form of medical treatment, such as how much input do you want to have in your treatment, what level of detail do you want to know, if you can refuse or stop treatment, where you would like to be treated, if there are alternative treatments, what are the side effects, etc.
Your healthcare team may bring it up with you since they must be involved in some of your advance care planning, such as signing any Do-Not-Resuscitate (DNR) orders and creating and signing Physician Orders for Life Sustaining Treatment (POLST) documents that reflect your wishes. Descriptions can be found in the Advance Directives section.
Without specific authorization your healthcare providers cannot share any details about your condition and treatment. You will need to be specific about what details your healthcare providers can share with family and friends.