New England Yearly Meeting

A community of Quakers and Quaker meetings across New England.

Advanced Directives

Living Wills & Durable Powers of Attorney for Healthcare

Most of the material in this section comes from the materials and handouts used in a workshop given at New England Yearly Meeting in 2003. Much of the material had its origins in a NH program to train community facilitators to help people plan for their health care, talk about their choices, and have them respected. The program and enabling legislation and forms was in a manual published by the NH Partnership for End of Life Care; the material quoted was reviewed and approved by the "Partnership", that is by the state Hospital, Home Care, and Hospice Assocations, by the Bar and Medical Societies, and by the state chapters of the AARP and Council of Churches. Sandy Isaacs, May 2005

Advanced Directives: What Who When Where Why

Advanced directives refers to two items: living wills and durable powers of attorney for healthcare or health care proxies. Each state has its own rules about what to include, the form to use, whether a lawyer or only a notary public is required, and who may witness it. New Hampshire requires we use their state-specific forms. Although the other New England states do have state specific forms, they [Vermont, Maine, Massachusetts, Rhode Island, and Connecticut] all recognize an 8 page form developed by Aging with Dignity. In most states you can get the required forms at no cost from your local hospital, or obtain them from the secretary of state in hard copy. Alternatively you can download an Adobe portable document formatted [pdf] file from your secretary of state's web site.

The Five Wishes document by Aging with Dignity is an easy to read form recognized in VT, ME, MA, RI and CT which may be attached as a work sheet for those states [NH] that also require their specific forms. It guides you in easy every day non-legalistic language through answering these five questions:

  • Who do I want to make healthcare decisions for me when I can't?
  • What kind of medical treatment I want and what don't I want?
  • How comfortable do I want to be?
  • How do I want people to treat me?
  • What do I want my loved ones to know?

For the forms applicable in each state:

VT, Maine, Mass, RI, & Conn 
plus 37 other states

5 Wishes by Aging with Dignity
  [Telephone (850) 681-2010 ]

Examine the Non printable sample 8 page form

 

http://www.agingwithdignity.org/forms/5wishes.pdf

Answers to frequently asked questions

 

http://www.agingwithdignity.org/faqs.php

Or order copies from Aging with Dignity

 

$5/1copy or $25 for 25 copies!! -stock up for MM
http://www.agingwithdignity.org/catalog/

 

New Hampshire

 

forms available through "Healthy NH"

Order $2 copy 

 

http://www.healthynh.com/fhc/initiatives/performance/eol/ACPG-DNROrderForm.pdf

View and download a Guide which includes the NH forms

 

http://www.healthynh.com/fhc/initiatives/performance/eol/2010%20ACPG.pdf

 

 

All Other States

Downloadable pdfs by state: 
    1. instructions  
    2. forms

 

http://www.caringinfo.org/stateaddownload

 

 

 

A living will or terminal care document is a document expressing how you want to be treated when you become terminal or permanently unconscious. The idea is that this is written while you are in good health to express your desires so that others in the future do not have to rely on perhaps differing memories about what you said or want. While you are conscious, your views are the main guides. The living will only becomes effective when the attending physician and a second physician certify that you are in a terminal or permanently unconscious state.

A durable power of attorney for healthcare or healthcare proxy authorizes someone else to act and decide for you when the attending physician certifies that you lack capacity. The idea is that you cannot imagine or give instructions in a living will for every set of circumstances that may arise in the future and that you will choose someone you trust to honor your values and make decisions when you can not. If there's a conflict between the living will's specifics and those in the durable power of attorney for healthcare [henceforth abbreviated to DPOAH] the DPOAH takes precedence.

The person chosen to be your DPOAH should be one whom you are confident both understands and will respect your values [even if perhaps having different values], has the judgment and personality to stand up for your wishes even if the immediate medical establishment is not sympathetic, and also has the skill to be tactful yet to prevail. 

It is wise to have one or two alternate DPOAH's named in case the primary cannot be reached or serve.  Provide for each as much contact information as you can: at least their full name, residence address and telephone number; hopefully you can add their office phone number and email addresses.  

The living will concerns health issues only and is not to be confused with your will which generally covers only instructions on disposition of property. A third kind, the ethical will, is a document sometimes written to express values and personal philosophies to those who remain.

The durable power of attorney for healthcare is only about health and should not be confused with other powers of attorney [temporary or durable] which may be created are for property or other non-health issues that might be important for executors and trustees of regular wills.

While you are competent the documents are not in force and your expressed wishes are to prevail. The documents should be created and reviewed while you are in good health and necessary changes are best made then. Be careful to follow your state's instructions to get legally qualified witnesses and have the documents notarized.
Under recent federal laws, all hospitals are required during admitting to ask you about your advanced directives. When you are in distress in an emergency room is not the best time to be bothered with such questions.

Make sure the advanced directives are properly executed, witnessed, and notarized.  Many fill the Advanced Directives out but do not take the last and essential step of having them made official.  It is not necessary to have an attorney involved though it may be useful if you have one who's also responsible for your non-medical will and powers of attorney.

Distribute the Advanced Directives to all your family so, even if they don't all agree with your wishes, they will know what you want and hopefully won't express their own contrary views to hospital staff. In spite of the letter of the law, it's very difficult for medical staff to follow your advanced directives if they are getting conflicting, maybe very emotional contrary, appeals from one or more family members.
To make it easier for those who are hesitant to discuss their advanced directives with children, remember that accidents happen to everyone, probably more to younger, more active people, and that your adult children should be encouraged to fill out their own medical directives and then will be more comfortable talking about their parents.  Treating the filling out of advanced directives as a normal process all adults should go through and thinking about it that way, will help to dispel the thought that even talking about such things is morbid and to be avoided.

In addition to family, distribute copies of your notarized authenticated advance directives to your doctor, to the medical records department of your hospital, to your lawyer if you have one, to any loved ones near you, and to the crisis or death and dying files in your monthly meeting.

After admission to a hospital, your primary care physician may be seldom seen, as very often your hospital doctor will be someone in a specific specialty or someone on the resident staff. It's best to make sure that your medical records file on the floor or ward, has your current advanced directives and that staff knows that they exist. A member of your family or a loved friend can check into this. Unfortunately this precaution is important even if you are in a hospital with a medical records department to whom you have already given a copy of the advanced directives.

Keep a list of all the people and places that have copies, as this will be handy if you want to update them in a few years. Our ideas as to our last wishes change as we get older. For timely communications, the address list should show not only full mailing address but also daytime, evening and cell telephone numbers and, if regularly used, email addresses. It's also a good idea by each entry to note when you last used the related address, phone number, or email, thereby reassuring yourself of how current that information is.

By definition accidents occur at unexpected times and places so you may not have control of what hospital you end up in. Some people carry cards in their purses and wallets to explain where their advanced directives may be found. Some people keep copies in their car glove compartments.  Medical bracelets, chest lockets and tattoos have been mentioned by emergency medical technicians - though the last maybe only as a joke!

A DNR is a "Do Not Resuscitate Order" that a physician writes instructing other caregivers in the hospital that if breathing or heartbeat stops, there are to be no attempts at assisted ventilation or external cardiac massage.  This order says nothing about other aspects of care which you should decide on and specify your wishes in your Advanced Directives.  When you are outside of a hospital, a POLST [Physician Order for Life Sustaining Treatment] may in some states have the same Do Not Resuscitate instructions followed by caregivers outside the hospital.  You should check with the non-hospital institution [retirement or nursing homes or hospice] what orders they require from your physician.  Also ask and understand the laws in your state regarding whether 911 emergency medical technicians are required by state law to specifically follow or ignore DNR and POLST orders. 

If one is at home and terminal, as all hospices at home will advise you, decide ahead of time whether you want to be resuscitated. Those who do not want to be resuscitated and do not have DNR or POLST physician written orders, should be aware and instruct those around them against calling 911.  Emergency medical technicians on 911 duties have been instructed to do everything including resuscitation attempts to get people alive to the emergency room; they do not respect DNR's.  If you do not wish these efforts, do not call 911. 

Cardiopulmonary Resuscitation CPR.

In most healthcare facilities, there is a standing order to start CPR unless there are clear orders not to attempt it.  CPR tries to restart breathing and heartbeat; typically the effort lasts for 15 to 30 minutes and may require administering medicine, insertion of a tube to assist with breathing [intubation], and electrical stimulation of the heart.

Pluses: Works best for healthy people whose hearts have stopped suddenly from an accident or heart attack or in those whose underlying condition can be effectively treated, and if initiated within five minutes of the arrest of the heart.

Minuses: Less than 10% of hospitalized patients survive CPR and return to previous functional status.  1 to 4% with multiple underlying medical conditions survive to leave the hospital.  Chest pressure can cause soreness, broken ribs, or collapsed lungs.  Many CPR survivors require a period of time on ventilator support.

Artificial Ventilation

Unlike cardiac arrest, respiratory arrest often occurs with some time to consider whether intubation and ventilation should be provided.  Intubation involves inserting a tube through the mouth or nose into the lung.  The tube is then connected to a breathing machine or ventilator.

Pluses: We breathe to provide oxygen and remove carbon dioxide.  After pneumonia or the need for support following surgery or a collapsed lung from an accident, the breathing tube and ventilator provide enough respiration while the lung is healing or the body is recovering from another illness.  For those with chronic pulmonary disease, artificial ventilation may be used on a trial basis to see if the patient can improve enough to adequately breath on his own.
Minuses: The tube produces discomfort from throat irritation, coughing, and the need to suction secretions from the airway.  Medications such as morphine and sedatives may be needed to treat the discomfort and may alter the patient's level of consciousness.

Artificial Nutrition and Hydration

These involve short-term or long-term provision of a balanced mix of nutrients and fluids via tubes [nasogastric, gastronomy, jejunostomy, intravenous] directly into the stomach, intestine, or vein.  In the short-term these measures support the patient while the underlying cause of the ability to take nutrition is corrected like recovery from surgery,  In the long term they provide nutrition for patients who will not recover ability to take nutrition on their own resulting in persistent vegetative states and irreversible neurological disorders.
Pluses: Prolongs life, honors individual's personal or religious beliefs, prevents weakness, dry mouth, and thirst related to dehydration.
-'s  Aspiration of nutrients into lungs, esophagus and stomach irritation and discomfort, increased fluids into lungs require more frequent suctioning.  If a patient is confused and pulling at tubes, physical or chemical restraints may be required.  IV fluids increase congestion around other organs causing pain and discomfort as well as more urination requiring frequent elimination needs and linen changes.

Antibiotics

Infection once was the cause of many deaths in both the old and the young.  Sophisticated antibacterial agents now can prevent many deaths even with serious infections.

Pluses: Eliminates source of infections and accompanying side effects such as fever, chills, and discomfort.

Minuses: Many antibiotics need be administered by IV with some potential discomfort associated with starting and maintaining the IV.

Dialysis

This is used when kidneys fail to take on their function of removing waste from the blood stream.  If this waste isn't removed it builds up and causes death.

Pluses: Removes waste, lets other organs perform better, prolongs life.

Minuses: Once the kidney is gone, dialysis is required for the rest of the patient's life.  Requires insertion of catheter and several hours to remove and filter the patient's blood, several times a week. 

Expense

In summary, procedures and legalities aside, maybe the most important benefit of filling out advanced directives is relieving your loved ones of having to guess what you want or of having them guess differently and disagree with one another.

The greatest assurance of having your wishes respected is to have a doctor who understands and respects your wishes and who has admitting privileges and respect in the hospital you may be taken to.  However since the doctor may predecease you, you may move to a different area, or in an accident you may be taken to an unfamiliar hospital the best assurance is to fill out and have executed your advanced directives and discuss them with your family.

Under Medicare, your primary care physician may bill for a visit whose sole purpose is to discuss your advanced directives.  Selecting a physician who will respect your values is worth the trouble of a separate office visit or checking out several physicians.

I would welcome hearing from anyone who reads this section on Advanced Directives who has a differing point of view, has more or a different understanding, sees errors, or would like to discuss any of this in more detail.  I've been a community facilitator in this area for about 3 years, have talked to about seven church groups and one work place "health affairs fair" and I learn something new at each one.    Sandy Isaacs  [email protected]  Tel (603) 532 8328 

New England Yearly Meeting of Friends

901 Pleasant Street, Worcester, MA 01602

(508) 754-6760 - [email protected]