Chapter 4 – End of Life Planning
As with anything in life that’s inevitable, the smartest thing you can do is expect it –
… and plan for it.
Consider:
Nearly 70 percent of Americans die in a hospital, nursing home or long-term care facility. (Centers for Disease Control, 2005)
7 out of 10 Americans say they would prefer to die at home. (Time/CNN poll.)
More than 80 percent of patients with chronic diseases say they want to avoid hospitalization and intensive care when they are dying. (Dartmouth Atlas to Health Care)
Less than 30 percent of Americans report having an advanced health care directive such as a living will. (Associated Press 2010).
A large-scale study found that only ¼ of physicians knew that their patients had advanced directives on file. (Critical Care Journal 2007).
You’ve likely planned for ALL the major phases of your life – doesn’t it make sense to plan for the end? While there is no guarantee of a “good death,” the odds are certainly better if you plan for one. Planning requires preparing Advanced Health Care Directives – documents that specify the treatment you want – or don’t want – as illness or debility occur. These documents will guide and instruct your partner, family and medical providers to tailor your end-of-life care to your wishes.
While addressing this subject, I strongly recommend reading Being Mortal by Dr. Atul Gawande, Metropolitan Books/Henry Holt & Co, LLC, 2014; from which the following paragraph, on page 155, is particularly germane:
“People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The question therefore is not how we can afford this system’s expense. It is how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives.”
Advanced Health Care Directives: the basic AHCD is a Living Will – something every adult American should have considered and prepared; when signed and witnessed, it specifically documents your wishes regarding medical care as you near end of life.
Note: Be certain to use a living will that is recognized by your state.
cf: Caring Connections (www.caringinfo.org for state-specific living will documents that are down-loadable and free.)
Also available at: www.doyourownwill.com.
cf: Go Wish Game: www.gowish.org/index.php (a card game with which to discuss healthcare priorities and wishes).
cf: Consumers Tool Kit for Health Care Advance Planning, American Bar Association, Commission on Law and Aging, at www.abanet.org/aging/publications/docs/consumer_tool_kit_bk.pdf
After completing your Living Will, have it witnessed or notarized, provide a copy to your doctor, clinic, hospital, your partner and family.
Other AHCD’s include the following
Health Care Power of Attorney (or proxy): this document identifies and empowers someone to be your advocate and authorized spokesperson regarding your end of life care if/when you are unable to speak for yourself. For couples this will normally be your partner. You may wish to have a secondary, or backup, designated proxy in the event that you and partner are both incapacitated. Obviously, this person must know your wishes.
A particularly useful advanced health care document is the
Personal Self-Assessment Scale (PSAS):
cf: www.OKtoDie.com/resourcesspage/PSAS/form
This document, adopted from the Palliative Performance Scale (PPSv2), by the Victoria Hospice Society, allows you to identify with great specificity the type of medical care you want, or do not want, at nine different categories or levels of mobility, activity level/evidence of disease, self-care, nutritional intake and level of consciousness. A completed PSAS should accompany your living will and Health Care Power of Attorney.
If you do not complete a PSAS form, consider the following:
DNR – Do Not Resuscitate form: in event you are found unconscious, this form advises medial responders and staff not to administer Cardio Pulmonary Resuscitation (CPR). The currently recommended CPR technique involves rapid, aggressive chest compression (100/minute), which, if done correctly on an older person frequently results in fractured ribs.
DNI – Do Not Intubate: a DNI form directs first responders and medical staff to refrain from intubation when your natural breathing function is inadequate.
Interestingly, you will be hard pressed to find a doctor or mortician receptive to intubation at the end stage of their life.
cf: “Death With Dignity: How Doctors Die,” Utne Reader, 6/25/12 May-June issue, article by Ken Murray, clinical professor of family medicine, University of Southern California, excerpted from Zocolo Public Square, (November 30, 2011).
POLST – Physician Orders for Life-Sustaining Treatment
Creation and promotion of the Physician Orders for Life-Sustaining Treatment (POLST) originated in the Pacific Northwest by a group of physicians, palliative care and other practitioners focused on treating patients in end-of-life situations. To execute this document, meet with your physician to discuss the options and consequences of available choices on the form; the form allows for “Yes or NO” options on the following treatments: CPR; Medical Interventions; and Artificially Administered Nutrition. Discuss the options with your doctor; make your selections and sign the form, as will your doctor. Your doctor, clinic or hospital should retain a copy. Display the original PINK or CHARTREUSE copy prominently in your home – preferably on the refrigerator. The POLST is a legal document, requiring medical practitioners, knowledgeable of its existence, to honor your desires. Increasing numbers of states are recognizing and accepting the legal status of the POLST; check with your state for its current position.
cf: Note: First responders and medical staff can only honor these directives IF they know of them. To avoid an emergency where you are alone, without partner, family or medical personnel knowledgeable of your choices & desires, you can obtain a bracelet inscribed NO CODE, which alerts responders to your decision to forego resuscitation or intubation. Some doctors have had NO CODE tattooed on their chest to ensure their aversion to such unwanted treatment
cf: www.polst.org, or www.nolo.com, or www.wasma.org
Palliative Care
In ideal circumstances the caregiver has the health, ability and resources to keep the ailing partner at home in comfortable familiar surroundings, gradually adding the equipment and special apparatus required for in-home care. Palliative care is an accepted and expanding medical program of recent origin, staffed by specially trained doctors and nurses, designed to help patients remain at home, addressing symptoms and issues at home before the need for hospitalization. It can also assist singletons without family or caregiver support. Palliative care grew out of the hospice movement in the 1970’s but, unlike hospice, is not limited to the last six months of life; it can extend for years.
cf: “It’s OK to Die” by Dr. Monica Willliams-Murphy and Kristian Murphy
Hospice Care
Hospice is designed to treat terminal patients through in-home care when the patient has been determined to be terminal within six (6) months. Expenses are borne by Medicare for the special equipment and team of medical and support personnel attending the patient’s needs; the team includes a doctor, nurse, social worker, minister/priest and a volunteer to assist as needed, including assistance to the caregiver. Some hospice organizations have facilities to house patients if in-home care is not feasible.
cf. also Compassion & Choices
Note: Be alert for evidence of Elder Abuse: 85% is attributable to family members.
Other Topics for Discussion
Long Term Care Insurance
Question: should you buy long-term care insurance or self-insure? Variables include net worth, family medical history, availability of caregivers, & your degree of risk tolerance.
Continuing Care Retirement Communities – CCRC’s have three levels of contractual care: Life care or Extended Contract (all-inclusive care); modified care; and fee-for-service care.
cf: www.ccrc.com, for a national directory and website; or Senior Selections.
Distribution of Personal Effects
When you’ve discussed, decided & documented your individual wishes for end of life medical care (and shared them with your family), the next logical subject is “distribution of your personal effects, clothing, collections, keepsakes, heirlooms, etc.,” all the things unmentioned in your estate plans (see Chapter II – Estate and Financial Planning). This conversation is best limited to you and your children, without their spouses or partners. Some may know immediately what they’d like, while others may need time to identify preferences. Document their choices and review at periodic intervals to keep current. Do not exclude any offspring from this dialog, regardless of past frictions or estrangement. This is a time for mature, adult recognition of reality, with opportunity – if warranted - for healing and forgiveness.
Final Treatment and Arrangements
It’s your life – and your death - why not plan its conclusion!
Consider your life – and how you’d like it celebrated, whether with …
Flourish and flare …
Spare No Expense! …
Thoughtful, efficient, environmentally modest …
… or, tailored - something as unique as yourself!
The options are limited only by your imagination and budget, the latter varying from hundreds to many thousands of dollars. Death care is a $25 billion sector in the US economy, steadily becoming more consolidated and less competitive, with increasing emphasis on sales over service.
In America today traditional funerals - with burial - annually consume:
- 30 million board feet of hardwood (caskets)
- 104,000 tons of steel (caskets & vaults)
(enough to build a Golden Gate Bridge every year)
- 2700 tons of copper & bronze
- 1,636,000 tons of reinforced concrete
(enough to build a highway from NYC to Detroit every year)
- 827,060 gallons of embalming fluid & formaldehyde
(toxic chemicals).
A recent AARP members’ poll regarding preferences for type of burial registered 8% - traditional; 18% - cremation; and 70% - green. As more Americans consider their end of life options – before they die – increased attention is focusing on less costly alternatives.
Largely unknown is the fact that most states allow family/survivors to take custody of their loved one’s remains prior to final disposition. Similar to common burial practices a century ago, a small but growing percentage of Americans are taking charge of this very personal, very poignant function. Rather than embalming (which is not required in any of the 50 states), they wash & dress the remains; rather than a brief viewing at the mortuary, the body is placed on a layer of dry ice at home for visitation as desired over 2-3 days by family, neighbors, & friends. All options remain available for final disposition, whether funeral, memorial, burial, cremation or whatever. A growing cadre of trained and licensed home funeral planners (sometimes referred to as “death midwives” or “doulas”), are facilitating these family-run arrangements. The cost differential is dramatic. Equally dramatic is the resulting emotional benefits for survivors of having rendered these very personal and lovingly caring last treatments to their departed loved one.
cf: www.theatlantic.com/health/archive/2013/12/midwives-for-the-dying/282344
also: www.pbs.org/pov/afamilyundertaking/interview/php
also: www.asacredmoment.com
also: www.magazine.wsj.com/hunter/deathbecomesher/2/
Options for Final Treatment & Arrangements
Whether you rely on a mortician or home funeral planner for assisting with final treatment, there is a broad spectrum of options available, with equally broad range of costs. Burial can be arranged with a pre-payment plan, or when needed; many consumer advocates discourage pre-paid plans.
Cremation can also be arranged before needed with a regional or national membership plan.
Review these plans and contracts carefully for covered and uncovered services; history has shown that some plans omit important services, which are later added to the dismay of survivors who assumed everything was prepaid.
Veteran’s Benefits
Burial services at national cemeteries are available for veterans, their spouse and dependents free of cost.
cf: www.cem.va.gov/burial_benefits/
Other Considerations
Plan for some “fun” in your own funeral
cf: “When The Sun Goes Down: Planning the Funeral of Your Life,” Betty Brehaus, 2008, Publishing Works, Inc., is thought provoking, practical and fun. Included is a delightful variety of grave inscriptions, along with suggestions about “writing your own obituary,” “ethical wills,” etc.