Hospice

(Previously published in the Huffington Post)

Throughout my career as a doctor working with patients in hospitals, nursing homes and hospices I have had the opportunity to witness the dying process on many occasions. I have learned that even though the outcome of this process is always the same—the death of the physical body—there are many different ways to die.

In fact, each individual has a unique experience at the end of life. For some patients death is a welcome ending to a life well-lived, for others death is reluctantly accepted even though they don’t feel ready to let go of life, and some approach death kicking and screaming all the way. They “rage against the dying of the light” as observed by poet Dylan Thomas in a poem he wrote for his dying father.

Though I have seen that patients receiving hospice care often die with greater comfort than those in the hospital, there are still people who struggle all the way to their last breath, even when they are surrounded by loved ones at home. What makes the difference? Why are some people not able to be at peace when they die? Here are some of my observations from years of hospice work and my recommendations for ensuring that you have a peaceful death:

They haven’t thought about the end of life

We live in a society where death is still a taboo subject. Many people go through life without consciously considering the fact that they will die one day and are shocked when they receive the news that death is approaching. Since they’ve never thought about death they have no idea what type of care they would like to receive at the end of life and find it difficult to make clear choices for themselves while dealing with the stress and fear caused by a terminal diagnosis.

Recommendation #1: Begin to think about the reality that every living thing on this planet eventually dies and then spend time contemplating the fact that you too will die one day. The Bhutanese people have a practice of thinking about death 5 times a day and have been named “the happiest people” on earth. So make a point of thinking of death on a regular basis, perhaps reading books and watching films to help you get more comfortable with the idea of death.

They haven’t put their wishes in writing

Those who haven’t thought about death also have not made plans for the end of life or completed an advance directive. A recent study has shown that two out of three Americans have NOT put their end-of-life wishes in writing, which means they are more likely to receive expensive and unwanted care during their last days. According to a survey by the CDC, most patients do not want to die in a hospital attached to machines, but that is only possible if they have made the decision ahead of time and completed an advance directive.

Recommendation #2: Start by completing your own paperwork now for the end of life, such as a living will, estate plan, and funeral plan. Think through the options for care that might be available to you and formulate your own opinions—what is important to you? What are your wishes for your last days on earth?

They haven’t talked to their loved ones about their preferences

During a healthcare crisis many patients are unable to speak up for themselves about their end-of-life choices. If family members don’t know the patient’s wishes they will find it difficult to make appropriate decisions for their loved one on a moment’s notice. In my experience, uninformed family members are more likely to defer to medical providers when end-of-life decisions must be made and are also likely to experience guilt and conflict with one another over those decisions.

Recommendation #3: Once you’ve decided what you want for yourself at the end of life it is vitally important that you have conversations with everyone in your life that may be involved in making decisions for you. The more you talk about it the more you will create peace for yourself and for your loved ones when the time comes.

They have been unhappy all their lives

There is a saying in hospice that

people die the way they’ve lived.

I have observed that patients who have held onto bitterness and disappointment about life tend to be unhappy during the dying process as well. Since they had never learned how to be at peace with the circumstances of life, when death is near they remain angry and inconsolable. Woody Allen wrote for the movie Annie Hall that life is “full of loneliness, and misery, and suffering, and unhappiness, and it’s all over much too quickly.” This epitomizes the attitude of the unhappy patient at the end of life, who hated every moment of being alive but is now furious that it is coming to an end.

Recommendation #4: The antidote to this type of misery is to learn to find happiness within yourself long before life reaches its end. Each of us is responsible for creating our own joy in life, even if life hasn’t turned out as we have hoped. Conduct your own “experiment” and figure out what makes you happy—then cultivate those things in your daily life and you will look back one day to find that you have led a life filled with joy.

They are holding on to old regrets and resentments

Many of my dying patients have been ravaged by feelings of guilt and remorse over events of the past. They either have felt a deep need to make amends for some previous action of their own or they have been burning inside with resentment toward another person. Those who have not found their way to forgiveness have remained in this painful state of guilt and blame until their last breath.

Recommendation #5: It is never too early to start working on letting go of old wounds so that you can avoid the overwhelming negativity of resentment at the end of life. Develop your own daily practice of forgiveness and you will find much more peace in your life now, as well as during your last days.

They feel entitled to a different outcome

Some of my patients have been angry about the fact that they were dying because they spent much of their lives doing things they believed would “prevent” them from dying. They devoted themselves to a restrictive diet or intense workout plan or even strict religious practices in order to live life “the right way” and avoid something “bad” from happening to them. When they ultimately had to face the fact that they were going to die anyway they felt cheated and betrayed. They had fallen for a false belief that their healthy habits would somehow entitle them to avoid death.

Recommendation #6: It is important to come to terms with death, and your fear of it, earlier in life so that you don’t waste time and energy trying to prevent what is inevitable. Develop a practice of thinking about death as a necessary part of the life cycle and something not to be feared, but to be respected. Journaling, prayer and meditation can be helpful tools as long as they focus on the reality of death and are not serving as bargaining chips in a futile attempt to avoid death.

They rely on the medical system to make choices for them

Those patients who have avoided thinking about death generally have also not taken time to educate themselves about their own health issues. Without knowledge and information as a tool to guide decisions, they are disempowered when they must engage with the medical system. They don’t know what questions to ask or what alternatives to explore so they simply place all decision-making in the hands of their care providers. These patients may end up with more treatment than they want and encounter more suffering than necessary because they didn’t have the confidence and information they needed to help determine their own course.

Recommendation #7: While doctors are well-educated about disease and treatment modalities, they know very little about you, your life path and what options might be best for you. When you receive a chronic or terminal diagnosis it is your responsibility to learn as much as you can about your options by asking questions, reading and studying, and requesting second opinions. You are the only expert on the subject of “you” so don’t give up your power to another person, no matter how impressed you are with their credentials.

In summary, by looking at why some people don’t die in peace we have seen what is necessary in order to have a peaceful death. Being consciously aware of your mortality, working on your past issues, making plans and completing paperwork for the end of life, communicating with loved ones, and empowering yourself with knowledge are all important steps toward an end of life that offers comfort rather than chaos. But it requires work and dedication on your part to prepare now for what will be coming in the future.

Of course there are other reasons why some people don’t die in peace: they may have pain and other symptoms that haven’t been managed well, they may be alone and have no one to comfort them, they may simply be overwhelmed by the hand that life has dealt to them. But these are issues that may be addressed by finding support from hospice or palliative care workers, if that type of care is available (and reliable) in the community, though there are reports that hospice staffs are stretched too thin in some areas and care at times falls short of what it should be.

But you can improve your own chances of getting good end-of-life care by doing your own inner work, becoming an advocate for hospice and palliative care in your community, holding those organizations accountable to best-practice standards, and supporting causes that help people find peace in their lives. It’s never too early to start!