End of life in many ways is a journey that you must plan for like any other trip into unknown territory. It’s important to make plans for how you want to spend the time you have left to live. For some people the journey will be months, others weeks, or it maybe even as short as days. Either way, a good plan makes for a better trip that allows you and your family to invite in the kind of memorable moments that happen on a trip into the unknown when you’re not scrambling around lost in fear that stirs chaos and ultimately leads to regret for you and your family members. A good end life plan lights the way in what could be an otherwise dark stage of life.
In most cases, your doctor is the first person to give you some recommendations on which direction to go in and some inclination of what that terrain will look like for you. How each doctor approaches that initial end of life care conversation depends on a number of factors. Often times, doctors are reluctant to give a life-limiting prognosis, often because of their own fears. In reality, when the doctor gives the patient a prognosis, he or she is really giving the patient and the family a “gift”.
Recently, Atul Gawande, a surgeon who wrote an excellent article entitled “Last Days” that unfolded the complexities and costs of end of life care in the New Yorker. And later he spoke at the annual New Yorker conference more specifically about “End of Life Conversations.” As a surgeon, he admitted that he’d botched these conversations with his patients more than once. In his humility, he decided to ask some of the leading palliative care doctors how they approach these difficult conversations.
As patients and family members, we have to remember doctors are use to figuring out the next step in a treatment plan toward healing, but when there are no more treatments, then comes the end of life conversation. Palliative care doctors have been specially trained to care for patients with terminal illnesses. He spoke to many, but found that Dr. Susan Block, Director of the Dana Farber Cancer Institute at Harvard. She carries a mental list of four questions when going in to talk to a patient about end of life care.
Do you know your prognosis?
What are your fears about what is to come?
What are your goals? Or what would you like to do as time runs short?
What are the tradeoffs you are willing to make for the sake of added time?
These questions help her make the right recommendations for the end of life journey. It’s not about do you want a ventilator, or not, Gawande said, it’s about how you want to live and spend the time you have left?
Megory Anderson, the founder of the Sacred Dying Foundation and thelogian who specializes in end of life rituals at University of San Francisco, says that people making plans for the end have a three-tiered agenda. The first is taking care of paperwork associated with bringing closure to your life. The second is reviewing one’s life, making amends with people and saying farewell. The last one is less tangible— getting right with God or preparing to meet God. When you look at this end of life journey through that prism you can see why there is an interdisciplinary team in hospice and palliative care to help you.
The paperwork might begin with a few documents listed below that help you organize your expectations and ensure your family is prepared with a tangible map that will guide the way.
Your living will is a legal document that is used in the medical field to provide doctors and your family with your decisions about life-saving and life-prolonging treatments, i.e. life support like a ventilator or a heart shock, in the event you become incapacitated. In this document you state who is your healthcare proxy to carry out these decisions for you.
The living will is for the medical field.
Physician Orders for Life Sustaining Treatments
The Physician Orders for Life Sustaining Treatments is a recognized end of life planning document among the healthcare community. The POLST allows healthcare professionals to become aware of the patient’s wishes for care and honor them. The POLST form is a physician order that is representative of the patient’s desires and is instrumental in focusing on the conversation before you become seriously ill. The POLST does not replace the Advance Health Care Directive (AHCD). ACHD allows you to name a healthcare decision maker if in the future you are unable to communicate your wishes for yourself.
There is a really great resource called The Five Wishes that combines the living will and last wishes into one document that can be ordered online. It’s filled with questions and suggests that help your family and doctor know the following:
• Who you want to make health care decisions for you when you can’t make them.
• The kind of medical treatment you want or don’t want.
• How comfortable you want to be.
• How you want people to treat you.
• What you want your loved ones to know.
The End-of-Life Plan
A more informal document is an end-of-life plan for you and your family to prepare for your journey in a similar fashion to a woman who writes a birth plan of how she envisions the birth to go. She writes where she would like to give birth, home or the hospital, the members of her birth team, the interventions she will accept and those she won’t, the people she wants to be present, the music she wants played, the candles she wants lit, the flowers she wants in the room and the list of people she wants contacted with the news. In spending time creating her birth plan, she envisions what she believes will be a peacefully, loving environment for her to give birth.
You also have the right to put together an end-of-life plan that can be verbal or written. It’s good to discuss your expectations, fears and last wishes with your family and caregivers. The end-of-life plan can be a one-sheet or two about how you want your final days to look. You may wish to die at home. You may wish to be surrounded by loved ones. Write a list of those people you wish to accompany you and complete it with contact information. You may want fresh fragrant roses, lilies or irises at the bedside. You may have a specific music playlists of uplifting, comforting music. You may want someone to read you your favorite passages from a Holy Book. You may want a small altar with pictures of your family, or mementoes collected over your life. You may envision a member of the clergy to be present and perform specific end-of-life rituals such as the last rites, or prayers. It’s easier to write down your last wishes to help you feel in control.
There is an excellent kit called Before I Go, You Should Know that you can purchase for $12 from the Funeral Consumers Alliance that can help you ink this plan with signpost type questions and suggestions to point you in the right direction. There will be probing questions followed by blank pages for you to write in your wishes.
The traditional will is a written record of your tangible personal possessions and property accumulated over your lifetime. These valuables are listed and then you direct how you wish distribute them. This can be created with a family law attorney.
The living trust is an excellent tool to protect your family from probate after you pass on. In America after the death, the assets of the estate listed in the will can be tied up in probate court for a year or longer before transferred to your family members. A protective living trust is a legal document that can be created by a family law attorney so that your assets go into a trust and then transfer directly to your beneficiaries when you pass on.
The Ethical Will is an instrument to guide you in reviewing your life and passing on the more intangible valuables—values, morals and life lessons—gained over a lifetime. These wills date back to Biblical times and are an instrument used to bestow your wisdom on the next generations. In the past, these wills served as reflections of the past, a person’s personal history about influential ancestors and lessons learned in life, while also forward-looking to the future in giving an instructional account of how he wished his children to live on after his death. The ethical will ensured the person nearing the end that his history, the experiences that shaped his values and influenced his spiritual beliefs would live on in the hearts and minds of his children. Some people have a special ceremony where you pass on your oral ethical will to your children.
It’s recommended that you tell a trusted family member or friend where you will store these important documents, be it a fireproof safe at home, or a safe deposit box at the bank or online.
In the kit Before I Go, You Should Know you’ll find pages that you could list where your wills are stored, the passwords to your email accounts, location and key information for a safe deposit box, the code for your online safe deposit box, your funeral plans and more personal messages such as last words to your family. You don’t necessarily need this booklet/kit but it’s an easy access guide, in lieu of it, you could also create a binder for your end-of-life plan, funeral plan and your other instructional accounts and let a trusted family member of friend know its location.
The Final Plan
The final plans, or more specifically the funeral plans, can be something you deal with a funeral home. Or if you are a member of a faith community often there is someone official that can help you and your family to organize the final plan. Some people like to take care of their own final plan rather than leave it in the hands of their bereaved family. This is personal but if you are going to make your own plans, including the family is often a good idea because the funeral is for the survivors. But certainly having your personal touch, buying your last piece of property on earth and planning your life’s final celebration can be a constructive way to deal with some of the fears that comes from trekking into the unknown. Preparations and choices are the key to diffusing fears of the unknown. Fortunately, there is a menu of choices for how you want your end of life celebration to look and feel, in fact you can even have a living funeral, a celebration before you pass on. If you know the end is near maybe you want to have a sendoff gathering to say farewell to your family and friends before you go. Either way, you may want to think about the list below to focus your wishes.
Memorial service is a ceremony without the body present. And a funeral has the body present either open or closed casket. So the first question is do you want a memorial service or funeral?
Then of course, where do you want this celebration of your life? It can be any place that represents you.
What kind of theme will best evoke you religious or self –themed?
Do you want a military funeral?
What kind of music do you want played?
Who do you want to give your eulogy? Or do you want it to be an open-mic ceremony?
What flowers do you want to be displayed?
What holy book readings or inspirational poems would you like read?
Do you want to return to the elements by earth or fire? Burial or cremation?
What do you want the post-ceremony party to look like?
At a glance now with these tools in place, you and your family have a clearer vision of where you will go on this journey, it no longer feels so unknown which frees you from some of your fears so that you can focus on spending meaningful time, making lasting memories that celebrate your life.