Sheila Grant, RN, BSN, CHPN Vice President Hospice & Palliative Care Network of Delaware
1900 2000 Age at Death 46 Years 81 Years Leading Causes Infection Accident Childbirth Cancer Heart Disease Stoke/Dementia Disability before Death Unusual & Brief On Average, > 4 Years Costs Low & Affordable Very High & Long Periods
88% say they want to die at home 20% actually die at home Source: Teno, JM et al. Family perspectives on end of life care at the last place of care. JAMA. 2004;291:88-93
May address: CPR Ventilator Artificial Nutrition & Hydration Antibiotics Transfusions Dialysis Invasive Procedures Anatomical Gifts ***May instruct YES or NO
Allows you to name someone to make decisions for you, if you are unable to make them yourself Doesn’t take effect UNTIL you are unable (“springing”) Usually has space for 2 decision-makers, in case one is unavailable Pick the right person Knows your wishes Strong advocate Available, willing
Can act for you ONLY if you are UNABLE TO MAKE DECISIONS for yourself. MUST make decisions IN AGREEMENT WITH YOUR DESIRES as stated in your Living Will or as otherwise known to the agent. “ Substituted Judgement”, or if unknown “ In the patient’s best interest”
You do NOT need an attorney You do NOT need a notary in DE/PA/NJ/MD You DO need two witnesses, not related to you, who will not inherit from you Make copies and distribute Family Physician POA’s Keep several copies yourself and take to hospital or facility if you go Copies have the same force as an original
Each state has a hierarchy of decision makers. In Delaware— Spouse Adult Child Parent Adult Sibling Adult Grandchild Adult Niece or Nephew Guardian: Adult who has exhibited special care and concern—IF none of above are available AND if appointed by the court.
DE PA NJ MD If you do more than 1, make sure they all agree
Living Will Only when a patient is terminally ill or in a persistent vegetative state Medical POA Whenever a patient is incapable of making or communicating a choice.
(see handout) Call and make pre-arrangements Talk to family members Leave written instructions in Living Will Leave written instructions with Funeral Director If you use a hospice, inform them of your wishes to be a donor—provide ph. # of agency
People's number one fear is public speaking. Number two is death. Death is number two . Does that sound right?”
So, if you go to a funeral, you're better off in the casket than doing the eulogy .”
Two fundamental facts ensure that the transition to death will remain difficult: Medicine's inability to predict the future A widespread and deeply held desire not to be dead Garnering Support for Advance Care Planning Terri R. Fried, MD; Margaret Drickamer, MD JAMA. 2010;303(3):269-270.
On a scale of 1 to 5, where do you fall on this continuum? If there were a choice, would you prefer to die at home, or in a hospital? Could a loved one correctly describe how you’d like to be treated in the case of a terminal illness? Is there someone you trust whom you’ve appointed to advocate on your behalf when the time is near? Have you completed any of the following: written a living will, appointed a healthcare power of attorney, or completed an advanced directive? engage with grace .org The One Slide Project 1 2 3 4 5 Don't give up on me no matter what, try any proven and unproven intervention possible Let me die in my own bed, without any medical intervention
What is most important to you? What makes life worth living? What would make living intolerable?
Specific treatments you want or don’t want How important comfort is to you How you want to be treated What you want your loved ones to know Allows you to request hospice care
Do you love to be outdoors? To be able to read or listen to music? To be aware of your surroundings? Seeing, tasting, touching? What are your fears regarding the end of life? Would you want to be sedated if necessary to control your pain, even if it makes you drowsy or puts you to sleep much of the time? Would you want to have a hospice team or other palliative care (i.e., comfort care) available to you? If you could plan it today, what would the last week of your life be like? For example… Where would you be? What would your environment be like? Who would be present? What would you be doing? What would you eat if you could eat?
Are all good ways to think through, communicate, and document your values and wishes for care before you get sick. BUT you cannot be sure they will be followed.
Family disagrees with LW Not all family members are “ready to let go” Physician feels “we have to do something”, and family goes along Cannot find LW/have not talked about it Living will is unclear in present situation.
Specialized care for people with serious illness and a limited life-expectancy ( 6 months or less). Interdisciplinary team (Dr., RN, C.N.A., SW, Chap., Vol.) Includes: visits, medications, medical equipment, 24/7 nurse for emergencies, 13 mos. bereavement 100% covered by M’care & most ins.—No one denied for financial reasons
Hospice care neither shortens life, nor prolongs death . It provides comfort and quality of life. A recent study showed hospice patients lived as long or longer than a matched group who chose aggressive care. Study groups with with lung cancer, pancreatic cancer, and CHF lived the longest on hospice care. [Journal of Pain and Symptom Management vol.33 no. 3 March 2007 ]
“ We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.” -- The New Yorker , 8/2/10
When hospice is suggested, families often say: “ We’re not ready for hospice.”
The MOST common survey response is “We wish we’d started hospice SOONER!”
PLEASE . . . Think about your values and wishes for the end of life Document Have a conversation with your loved ones It’s may be difficult now, but it will save bigger difficulties later