END OF LIFE: DIFFICULT DECISIONS DIFFICULT DISCUSSIONS

1. END OF LIFE: DIFFICULT DECISIONS DIFFICULT DISCUSSIONS

2. “Each day, we wake slightly altered, and the person we were yesterday is dead. So why, one could say, be afraid of death, when death comes all the time?” John Updike

3. One day, Duck turns around to find Death standing behind her. Terrified, she asks whether he has come to take her, but he remarks rather matter-of-factly that he has been there her entire life.

4. Talking about end-of-life is challenging Death and dying aren’t subjects that most people usually want to discuss. But it is one of the most important conversations we can have because it’s not actually about dying. It’s about how people want to live during their last months, weeks, and days. Ignoring end-of-life won’t make it go away!

5. End-of-life planning usually includes: The goals of care, like if certain medicines or treatments should be continued Where someone wants to spend their final days Which treatments they wish to receive What type of palliative care and/or hospice care they wish to receive

6. The care Americans say they want near the end of life differs significantly from the care they often receive. • If given the choice, a vast majority of Americans would prefer to die at home, • surrounded by family and loved ones • 70% die in hospitals, nursing homes, or long-term care facilities, • often after receiving unwanted medical treatment in their final days

7. HISTORY

8. - in1900 the average lifespan was 47.3 years -in1997 it had increased to 76.5 years -Women currently live seven years longer than men do -Among those 85 and older, there are five women for every two men -African American woman can expect to live 74 years, compared to 80 years for a European American woman -Social class factors, including income and education levels, also affect longevity. -People over the age of 65 will soon outnumber children under the age of five -By 2030, the number of people aged 65 and older is projected to reach one in eight of the global population, rising even more sharply (by 140%) in developing countries -In developed countries, medical services have all too often focused on preventing death rather than helping people meet death without suffering pain, discomfort and stress . -End of life care accounts for a huge portion of health care costs now, as well as costs to family, both tangible and emotional

9. CAUSES OF DEATH

10. Ten leading causes of death: • In 1900 In 1998 • pneumonia heart disease • tuberculosis cancer • diarrhea and enteritis stroke • heart disease chronic lung disease • stroke pneumonia & influenza • liver disease accidents • injuries diabetes • cancer suicide • senility kidney disease • diphtheria chronic liver disease

11. It is estimated that 70-80% of people in advanced industrial nations now face death later in life from chronic or degenerative diseases characterized by late, slow onset and extended decline

12. WHAT ARE WE DOING TO PLAN FOR OUR DEATH? • 82% OF ALL PEOPLE SAY IT IS IMPORTANT TO PUT THEIR END OF LIFE WISHES IN WRITING; ONLY 23% HAVE DONE THIS. • 90% OF PEOPLE SAY THAT TALKING WITH THEIR LOVED ONES ABOUT END OF LIFE CARE IS IMPORTANT; ONLY 27% HAVE ACTUALLY DONE SO • 60% OF PEOPLE BELIEVE THAT NOT BURDENING THEIR FAMILY WITH TOUGH DECISIONS IS IMPORTANT TO THEM BUT 56% OF PEOPLE HAVE NOT COMMUNICATED THEIR END OF LIFE WISHES TO FAMILY • 80% OF PEOPLE SAY IF THEY ARE SERIOUSLY ILL THEY WOULD WANT TO TALK WITH THEIR PHYSICIAN/NURSE PRACTITIONER/PHYSICIAN ASSISTANT ABOUT THEIR END OF LIFE CHOICES; 7% HAVE ACTUALLY TALKED WITH THEIR PHYSICIAN ABOUT THIS. • SOURCE: Survey of Californians by the California HealthCare Foundation (2012)

13. “Are you cold?” Duck asked. “Shall I warm you a little?” Nobody had ever offered to do that for Death.

14. They awake together in the morning and Duck is overjoyed to discover that she is not dead. Here, Erlbruch injects the lightheartedness always necessary for keeping the profound from slipping into the overly sentimental: She poked Death in the ribs. “I’m not dead!” she quacked, utterly delighted. “I’m pleased for you,” Death said, stretching. “And if I’d died?” “Then I wouldn’t have been able to sleep in,” Death yawned. That wasn’t a nice thing to say, thought Duck.

15. But since any friendship is woven of “a continued, mutual forgiveness,” Duck eventually metabolizes her hurt feelings and the two find their way into a conversation about the common mythologies of the afterlife central to our human delusion of immortality: “Some ducks say you become an angel and sit on a cloud, looking over the earth.” “Quite possibly.” Death rose to his feet. “You have the wings already.” “Some ducks say that deep in the earth there’s a place where you’ll be roasted if you haven’t been good.” “You ducks come up with some amazing stories, but who knows.” “So you don’t know either,” Duck snapped. Death just looked at her.

16. They could see the pond far below. There it lay. So still. And so lonely. “That’s what it will be like when I’m dead,” Duck thought. “The pond alone, without me.” Death sometimes read minds. “When you’re dead, the pond will be gone, too — at least for you.” “Are you sure?” Duck was astonished. “As sure as can be,” Death said. “That’s a comfort. I won’t have to mourn over it when…” “…when you’re dead.” Death finished the sentence. He wasn’t coy about the subject. They could see the pond far below. There it lay. So still. And so lonely. “That’s what it will be like when I’m dead,” Duck thought. “The pond alone, without me.” Death sometimes read minds. “When you’re dead, the pond will be gone, too — at least for you.” “Are you sure?” Duck was astonished. “As sure as can be,” Death said. “That’s a comfort. I won’t have to mourn over it when…” “…when you’re dead.” Death finished the sentence. He wasn’t coy about the subject.

17. As summer winds down, the two friends visit the pond less and less, and sit quietly in the grass together more and more. When autumn arrives, Duck feels the chill in her feathers for the first time, perhaps in the way that one suddenly feels old one day — the unannounced arrival of a chilling new awareness of one’s finitude, wedged between an unredeemable yesterday and an inevitable tomorrow.

18. ONE CONVERSATION CAN MAKE ALL THE DIFFERENCE

19. Remember: • You don’t need to have the conversation just yet. It’s okay to just start thinking about it. • You can start out by writing a letter—to yourself, a loved one, or a friend. • You might consider having a practice conversation with a friend. • Having the conversation may reveal that you and your loved ones disagree. • Having the conversation isn’t just a one-time thing. It’s the first in a series of conversations over time.

20. END OF LIFE PLANNING AND DISCUSSIONS: • Many families never discuss the kind of care a person wants until a crisis - the worst time to make such decisions. • Often Health Care Providers do not discuss end of life planning until • there is a crisis or a diagnosis where one needs to face this. • Medicare is now reimbursing Primary Care Providers (MD’s/NP’s/PA’s) • for discussing Advanced Care Planning. • All adults need to plan for their health care, what they want and do not want, • as death is not just something the elderly face. • Words matter! Do you want to prolong your living (quality of life) or • prolong the dying process (quantity of life)?

21. THE CONVERSATION PROJECT

22. When you think about the last phase of your life, what’s most important to you? How would you like this phase to be? • Do you have any particular concerns about your health? About the last phase of your life? • What affairs do you need to get in order, or talk to your loved ones about? (Personal finances, property, relationships) • Who do you want (or not want) to be involved in your care? Who would you like to make decisions on your behalf if you’re not able to? (This person is your health care proxy.) • Would you prefer to be actively involved in decisions about your care? Or would you rather have your doctors do what they think is best?

23. Are there any disagreements or family tensions that you’re concerned about? • Are there important milestones you’d like to be there for, if possible? (The birth of your grandchild, your 80th birthday.) • Where do you want (or not want) to receive care? (Home, nursing facility, hospital) • Are there kinds of treatment you would want or not want? (Resuscitation if your heart stops, breathing machine, feeding tube) • When would you want to shift from a focus on curative care to a focus on comfort care alone?

24. WHAT KIND OF ROLE DO YOU WANT TO HAVE IN YOUR DECISION MAKING PROCESS?

25. AS A PATIENT, I’D LIKE TO KNOW • ONLY THE BASICS ABOUT MY CONDITION AND MY TREATMENT • ALL THE DETAILS ABOUT MY CONDITION AND MY TREATMENT.

26. AS DOCTORS TREAT ME, I WOULD LIKE • MY DOCTORS TO DO WHAT THEY THINK IS BEST • I WANT TO HAVE A SAY IN EVERY DECISION

27. IF I HAD A TERMINAL ILLNESS, I WOULD PREFER TO • I WOULD NOT WANT TO KNOW HOW QUICKLY IT IS PROGRESSING • I WANT TO KNOW MY DOCTOR’S BEST ESTIMATE FOR HOW LONG I HAVE TO LIVE

28. HOW LONG DO YOU WANT TO RECEIVE MEDICAL CARE? • INDEFINITELY, NO MATTER HOW UNCOMFORTABLE TREATMENTS ARE • QUALITY OF LIFE IS MORE IMPORTANT THAN QUANTITY

29. “I’m cold,” she said one evening. “Will you warm me a little?” Snowflakes drifted down. Something had happened. Death looked at the duck. She’d stopped breathing. She lay quite still. “I’m cold,” she said one evening. “Will you warm me a little?” Snowflakes drifted down. Something had happened. Death looked at the duck. She’d stopped breathing. She lay quite still.

30. Stroking her disheveled feathers Stroking her disheveled feathers back into a temporary perfection, Death picks Duck up and carries her tenderly to the river, then lays her on the water and releases her into its unstoppable flow, watching wistfully as she floats away.

31. “Perhaps tragedies are only tragedies • in the presence of love, • which confers meaning to loss.” • Elizabeth Alexander

32. WHAT KIND OF CARE DO YOU WANT TO RECEIVE?

33. WHAT ARE YOUR CONCERNS ABOUT TREATMENT? • I AM WORRIED THAT I WON’T GET ENOUGH CARE • I AM WORRIED I WILL GET OVERLY AGGRESSIVELY CARE

34. WHAT ARE YOUR PREFERENCES ABOUT WHERE YOU WANT TO BE? • I WOULDN’T MIND SPENDING MY LAST DAYS IN A HEALTH CARE FACILITY • I WOULD RATHER BE AT HOME

35. HOW INVOLVED DO YOU WANT YOUR LOVED ONES TO BE? • I WANT MY LOVED ONES TO DO EXACTLY WHAT I’VE SAID, EVEN IF IT MAKES THEM A LITTLE UNCOMFORTABLE • I WANT MY LOVED ONES TO DO WHAT BRINGS THEM PEACE EVEN IF IT DOES NOT FOLLOW MY WISHES

36. WHEN IT COMES TO YOUR PRIVACY • WHEN THE TIME COMES I WANT TO BE ALONE • I WANT TO BE SURROUNDED BY MY LOVED ONES • I DON’T WANT MY LOVED ONES TO KNOW EVERYTHING ABOUT MY HEALTH • I AM COMFORTABLE WITH MY LOVED ONES KNOWING EVERYTHING ABOUT MY HEALTH

37. YOU ARE READY TO HAVE THE CONVERSATION: • WHO DO YOU WANT TO TALK TO? • WHEN WOULD BE A GOOD TIME TO TALK? • WHERE WOULD YOU FEEL COMFORTABLE TALKING? • WHAT IS MOST IMPORTANT TO SAY?

38. THE FIVE WISHES Wish One lets you choose the person you want to make decisions for you when you can’t make them for yourself. Lawyers call it a "durable power of attorney for health care." Wish Two is a living will. It lets you put in writing the kind of medical treatment you want or don't want if you become seriously ill and can't communicate to anyone. Wishes Three and Four let you describe in detail how you want to be treated so that your dignity can be maintained. Wish Five gives you a chance to tell others how you want to be remembered, and to express other things that might be in your heart, like forgiveness.

39. HOW TO START THE DISCUSSION: • I NEED YOUR HELP WITH SOMETHING • REMEMBER HOW “MOM” DIED...WAS THIS DIFFICULT FOR YOU? • I WANT THINGS TO BE DIFFERENT WHEN I DIE • EVEN THOUGH I AM HEALTHY NOW, I WANT TO BE PREPARED • I NEED TO THINK ABOUT THE FUTURE. WILL YOUHELP ME?

40. I AM THINKING ABOUT HOW I WANT THINGS TO BE AT THE END OF MY LIFE. I’M WONDERING IF YOU HAVE THOUGHT ABOUT THIS… • I AM TRYING TO GET MY AFFAIRS IN ORDER AND TALK WITH MY LOVED ONES ABOUT THEM. HAVE YOU DONE THIS? • WHO WOULD YOU LIKE TO MAKE DECISIONS WHEN YOU ARE UNABLE? • DOES YOUR FAMILY HAVE DISAGREEMENTS OR FAMILY TENSIONS THAT YOU’RE CONCERNED ABOUT?

41. As the river spills off the book and we turn to the last page, we see Death surrounded by other animals — a subtle reminder that he will escort the fox and the rabbit and you and me down the river of life, just as he did Duck. And perhaps that’s okay. As the river spills off the book and we turn to the last page, we see Death surrounded by other animals — a subtle reminder that he will escort the fox and the rabbit and you and me down the river of life, just as he did Duck. And perhaps that’s okay.

42. “Death is our friend precisely because it brings us into absolute and passionate presence with all that is here, that is natural, that is love,” Rilke wrote in contemplating how befriending our mortality can help us feel more alive.

43. Bottom line: Most importantly, nobody can predict when end-of-life will happen. So, the best option is to plan ahead and start now. The last thing anyone wants is to try to have these conversations in the hospital.

44. With credit given to the following: DUCK, DEATH AND THE TULIP BY Wolf Erlbruch AND THE WEBSITE: BRAIN PICKINGS THE CONVERSATION PROJECT THE FIVE WISHES

45. What Exactly Is an "Important Paper"?

46. Legal Documents Wills and trusts let you name the person you want your money and property to go to after you die. Advance directives let you make arrangements for your care if you become sick. There are two ways to do this: A living will gives you a say in your health care if you are too sick to make your wishes known. In a living will, you can state what kind of care you do or don't want. This can make it easier for family members to make tough healthcare decisions for you. A durable power of attorney for health care lets you name the person you want to make medical decisions for you if you can't make them yourself. Make sure the person you name is willing to make those decisions for you.

47. Personal records • Full legal name • Social Security number • Legal residence • Date and place of birth • Names and addresses of spouse and children • Location of birth and death certificates and certificates of marriage, divorce, citizenship, adoption, service related documents • Employers and dates of employment • Education and military records • Names and phone numbers of religious contacts • Memberships in groups and awards received • Names and phone numbers of close friends, relatives, and lawyer or financial advisor • Names and phone numbers of doctors • Medications taken regularly • Location of living will and other legal documents

48. Financial records • Sources of income and assets (pension from your employer, IRAs, 401(k)s, interest, etc.) • Social Security and Medicare information • Insurance information (life, health, long-term care, home, car) with policy numbers and agents' names and phone numbers • Names of your banks and account numbers (checking, savings, credit union) • Investment income (stocks, bonds, property) and stockbrokers' names and phone numbers • Copy of most recent income tax return • Location of most up-to-date will with an original signature • Liabilities, including property tax—what is owed, to whom, when payments are due • Mortgages and debts—how and when paid • Location of original deed of trust for home and car title and registration • Credit and debit card names and numbers • Location of safe deposit box and key