End of Life Conversations
There is no easy way to bring up this conversation with your spouse or your parents, or even a friend. Many physicians find it uncomfortable talking to patients about end of life treatment and care issues. Only in recent years have some medical schools included a hospice rotation in their programs to expose students to pain management and the dying process.
Today, when physicians run out of treatment options or the patient decides no more, the physician is likely to write a prescription for hospice and the patient will never see that physician again. Generally, physicians see “death” as a failure, not as part of an ongoing process that could still benefit from their expertise. At the end of treatment, we need midwifery skills to rebirth the soul.
We all need to have some of these conversations with our appointed health care team and our family before we need to have them so that by the time we do need to have them, it is easier for everyone to make decisions. If your doctor hasn’t asked you if you have an Advance Healthcare Directive, tell your doctor you want some information to help you with filling one out.
If you are helping someone prepare their Advance Directive, ask, as part of the conversation, if they have thought about end of life care and how they would prefer to spend their last days, and if they would be interested in reading a book to give them some ideas to think about.
This is not a one time and forget about it conversation either. Just as our views about life and death change as we age, our thoughts about what we would want at the end of our lives tend to change as well. We may think differently at 70 than we did before we were 60 and could still do most of the things we loved to do. One might want to review his or her last wishes and final arrangements paperwork every five years, and more often as we grow older or our health changes.
Just as we need to plan ahead for end of life living arrangements by visiting appropriate assisted living facilities to help in the decision-making process when new health care and caregiving for physical and/or mental conditions become an urgent concern for a family member, we need to consider what we will accept as far as medical treatments and emergency interventions as our health condition changes.
Writing an Advance Directive brings up a lot of thoughts and can be a good time to open discussions about their beliefs and values, and what they want to consider in the way of treatments and care, living conditions, caregiving, family support and where they want to die.
Once everyone has the information and the forms in hand, it is easier to have a reasonable discussion about the many possible contingencies and talk about what one will accept or not accept as far as treatment near end of life (e.g., resuscitation, feeding tube, hydration, life support). It’s even less threatening if done as a family group discussion where opinions can be aired and everyone is clear about what each other wants.
There may be some strong differences of opinion about end of life healthcare decisions and some heated arguments may ensue. In the end, it has to be about honoring the departing person’s wishes. This is another reason to have these discussions before they are necessary and without the added stress of a sudden medical crisis. Decisions can be further discussed and refined over time rather than at the same moment life or death decisions are being made in the ICU. Some people put off thinking about any of this until it happens. This causes a great deal of stress on family members if they haven’t had The Conversation and there are differing opinions about what you would have wanted and what they think should be done or not done.
Countless studies have shown that extensive medical interventions can make the last weeks of life an excruciating experience for patients and those who care about them. It’s not just the elderly who need to have this conversation. Certainly everyone over 18 needs to consider their wants in case a life or death situation occurs. Parents need to have a discussion about their young children if one of them should become seriously ill or injured.
Some people will choose to prepare themselves while they are young and healthy so that whenever they die, however it happens, wherever they are, they will know what is going on as they are leaving their body, what options they may have once out of body, and what to do next. This is “conscious dying.”
Not conscious meaning awake, that would be nice but doesn’t always happen, but deliberate and intentional, under one’s control, aware of what’s going on and participating in the process.
Waiting until you are near death to accept that you are going to die, may keep your transition experience from being as awesome as it could be. Not knowing what to do or even that one has just died, may cause great confusion and missed opportunities to evolve in consciousness upon leaving one’s body.
Whether you believe life continues after the death of the body or not, if it does the information will be beneficial to you. If you’re right that there is no afterlife, it won’t matter but you will have lived a more loving and peaceful life in the meantime.
After you get a diagnosis that you have a life threatening illness, there may be little time to learn to practice dying consciously. It’s not that it takes a lot of time, maybe 30 minutes a day while you’re learning, it’s that everything else that goes with treating an illness is so overwhelming and before you know it, there is no more time. It’s one of those things better learned before you need it so it will be there for you when you do.
While we had gradually acknowledged to each other that he might not make it, we’d never really accepted it or talked about what it meant. I always thought we’d have a period of time when he was in hospice care when we would talk more and say our goodbyes. While I, and my kids, said lots of goodbyes and I love yous while he was in a coma, he was never able to communicate with us again. I still replay those last few days over and over and wonder how we didn’t know he was so close to the end and wonder if he knew. ~ Kathy’s story
A study in the Archives of Internal Medicine (2009), disclosed that the costs of care during the last week of life were 55% higher among those who did not have end of life discussions with their doctors. Also the quality of life in their final days was much worse than among those who did have such discussions.
Even more important than how your estate is to be settled is what are your end of life healthcare choices. Studies show that 40% of people have not yet thought about advance healthcare planning and 90% haven’t documented their wishes for end of life care (The Journal of the American Geriatric Society, 2009).
You’ve been in an accident. You’re transported by ambulance to an emergency room. You’re unconscious. Life or death decisions have to be made immediately. Your heart stops, do you want to be resuscitated? Under what circumstances? What if there is an 80% chance of full recovery? What if it’s only 10%? What if you’re 90 years old or dying from cancer? You’re in a coma for weeks, months, years. You’re in a persistent vegetative state with little hope of recovery. Would you want to be kept alive on machines and feeing tubes for a week, for a month, indefinitely? How will your loved ones know what to do if you don’t tell them beforehand or write down your last wishes?
The above is an excerpt from Chapter One of Diane Goble’s book
“Beyond the Veil: Our journey home”
Diane has trained Transition Guides around the world,
and written several books and articles encouraging people to have
Mentioning this book or giving it to someone you know who is getting older or has been dealing with an illness that has the potential to be fatal is a way to help get the conversation started. Introduce it with how it helped you or a friend (see Testimonials).