Quality of life and end-of-life care are receiving more attention these days then ever before. It’s a popular topic in the news and countless Web sites as more people are looking into end of life options for their parents and loved ones. However, information on it is one thing, but actually talking about it with a loved one is another, and oftentimes, these conversations happen when there is no more time to wait.
There’s no doubt that for some, it can be anxiety-provoking and uncomfortable to have this talk but it doesn’t have to be. Understanding the apprehension and fears your loved ones may feel about discussing this can save miscommunication and is the best way to ensure your loved one’s wishes will be honored.
So, why do people still not want to talk about it before it’s a necessity? Well, they do, but they’re just waiting for someone else to start the conversation.
The Conversation Project, a Boston-based public education campaign started by Pulitzer-prize winning journalist Ellen Goodman, was begun to get people talking about end of life care for their families and loved ones. Two thousand respondents revealed in a 2013 survey the top reasons people aren’t talking: they feel that it’s too early in their lives to have this conversation, they are not sick, are personally uncomfortable discussing it, and don’t want to upset their loved ones.
So how do you start? Using life events or news articles can be a great advantage to opening up a discussion. For example, after visiting someone in the hospital, or leaving a funeral, pay attention to comments your loved ones may make. They can be a clue as to what they want and can be a great ice breaker to start a dialogue and focus deeper on their wishes.
Parents don’t want to be a burden to their children and children don’t want to make their parents uncomfortable by talking about death. Each side ends up protecting the other, but what really ends up happening is that conversations and decisions are put off until there is no more time to wait. No one wants to see their parent die, but no wants to see their parent suffer, either.
Once the elephant in the room is acknowledged, it’s not uncommon for fears to be revealed. The top four common ones are:
- Fear of being kept alive by tubes and artificial respiration.
- Fear of ending up in a nursing home and/or dying in a hospital or institution.
- Fear of not being able to make own decisions because of dementia.
- Fear of losing independence.
Talking about the what-ifs and possibilities helps reduce questions and confusion about what’s really wanted and it will create peace of mind for the parent and the family once these wishes are known and clearly communicated. Here are some steps that can help alleviate end of life fears by taking action now and becoming knowledgeable about options:
- Create a living will. Many lawyers prepare a living will with their estate plan, which makes it easier. Living wills are different from regular wills in that it outlines the specific type of treatment preferences a person wants in the event they are not able to speak or make decisions for themselves. This is strongly recommended for Alzheimer’s and dementia patients. It’s important to note that Living Will requirements do change by state so it would be good to check with your lawyer on this.
- Find options for end of life care. End of life care doesn’t just mean nursing homes or hospitals anymore. More opportunities are making it available for people to remain in their homes at the end of life. A simple search for elder care, palliative care, or hospice can yield dozens of organizations that have information on the type of care available and suggestions for steps to be taken, including what Medicare and Medicaid will cover.
- According to the Alzheimer’s Organization, for 2016, more than 5 million Americans are living with dementia and it is the sixth leading cause of death in the United States, killing more people suffering from breast and prostate cancer combined. It’s a common fear to wonder what would happen if a person can’t make decisions for themselves anymore. One of the most important things that can be done is to designate a Power of Attorney (POA). Someone who can be trusted to make the decisions that are in right alignment with the patient so that when the time comes they are no longer able to make these decisions themselves, the POA can ensure that the wishes of the patient are carried out. A POA is something an attorney can draw up that typically goes hand in hand with a Living Will.
- Lastly, one of the biggest fears people have is of losing their independence. This is a big one especially when it comes to driving. Again, there are many viable home care options offering day programs, health care, personal care, advice on home modifications, transportation, and household maintenance.
End of life options are important to talk about and something that can be revisited as the person gets older because their views may change. But ultimately, to crack the ice and begin the conversation at all is the most important step you can take to ensure that end of life care choices are still choices while there is time.
The benefits of talking about this sooner rather than later will also give you and your family a sense of peace and security knowing that there is no missed communication and that your loved ones wishes will be honored.