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What do you want at End of Life?

With any important decision comes a frank and open discussion, especially when it comes to medical care preferences. There is always hope this discussion happens before you are unable to make decisions for yourself. These decision are called advanced directives and include your wish for what you want as your health care changes.

Is there ever a good time to talk about this? The holidays might be the right time – when family is together. If you prefer to skip the conversation, record your preferences in a letter, email, or during a routine doctor’s appointment. As long as you are able to communicate your wishes, you can change your mind about how you want to be cared for as your health changes.

Below is a list of questions you might consider to guide the conversation.

– Thinking about your death, what do you value most about your life?
– If you were diagnosed with a terminal illness, would you want to pursue every possible cure?
– Do you want to die at home?
– If not at home, where do you want to die?
– How much pain is acceptable to you?
– Do you want your family with you when you die?
– What decisions regarding care do you want to entrust with others?
– What do you hope for regarding your death?

I believe the most important question is “What do you want at end of life?” I met with a woman who asked her father this, and he said, “As long as I can have chocolate ice cream and watch football, I will be fine.” His answer surprised her, but it also told her what was important to her father and helped guide her when his health changed.

We all have different values. We know that what is important to one person might not be important to another. Spiritual, cultural, social and economics may influence decision-making. Understanding options and what is available is important as these decisions are considered.

Sometimes people do not want to stop curative measures. At some point, however, the person may not be able to physically withstand additional surgery, chemotherapy or other treatment. Palliative care, which helps relieve pain and provides symptom management, can be a relief and an option. Hospice provides care to the patient and entire family. Curative care is stopped and replaced by comfort care to reduce pain and other symptoms associated with the illness. Hospice also supports quality of life while supporting the family helping to care for the patient. Hospice provides a range of services for a variety of illnesses through a team approach that offers support physically, socially, and spiritually. Hospice also offers bereavement to families after the death of a loved one. Hospice does not take away hope – it offers a different kind of hope.

Discussing a care path or change in the goal for care is difficult for family members. However, having the conversations sooner rather than later can ensure you are providing the care your loved one desires.

Kathleen Weston
Preceptor Hospice Director of Operations

A Good Fit – Living Wills, Health Care Power of Attorney, and Do Not Resuscitate Orders

Just like peanut butter and jelly or green and gold, living wills and do not resuscitate orders go well together. A living will is a written document that allows you to tell your doctor about the type of life-sustaining treatment you want when you are near death or in a vegetative state. This document is created as part of your advanced directives. A living will reflects your wishes as your health situation changes. By making your wishes known, you are taking responsibility for how you want to be cared for. The State of Wisconsin has a template on their website

http://www.dhs.wisconsin.gov/forms/advdirectives/index.htm

which can be downloaded, printed and reviewed. Once you make your decisions and sign your living will, give a copy to your primary physician, your hospital and your family.

A Healthcare Power of Attorney allows people who become unable to make their own decisions to exercise their beliefs and wishes regarding medical procedures. The person’s agent can communicate on behalf of the sick or injured person, preventing unwanted treatment or making necessary decisions in the event that the individual is unable to do so. The process of denoting a Health Care Power of Attorney is fairly straightforward and the privilege can be revoked at any time by filling out a new form and destroying the old copies of the previous form. The website noted above has the form for Healthcare Power of Attorney. This form can also be downloaded, printed and reviewed. Once you make your decisions, sign the document in front of two people who are not relatives and provide a copy to your primary physician, hospital, and family.

A Do Not Resuscitate order (DNR) is a State of Wisconsin statute that encourages a conversation with your doctor. A DNR is for adults over the age of 18 who either have a terminal illness or a medical condition where CPR would be unsuccessful in restoring your heart or breathing functions. Becoming a DNR is a decision your doctor must agree is appropriate for you based on your health. If your doctor agrees, you and (s)he sign the document and a bracelet is worn identifying you as a DNR. The purpose of wearing the DNR bracelet is to alert medical professionals including EMTs, doctors, nurses, etc. that you are not to be resuscitated if you are no longer breathing, do not have a heartbeat or a pulse. There are different types of bracelets available, a plastic bracelet bearing your personal information and your doctor’s signature or a metal bracelet with your personal information and the international symbol of the Staff of Aesculapius.

If a person has a life threatening event, the DNR bracelet informs a medical provider that they should do the following to help you:
– Clear airways
– Administer oxygen
– Position for comfort
– Splint
– Control bleeding
– Provide pain medication
– Provide emotional support
– Contact hospice or home health agency if either has been involved in the patient’s care, or patient’s attending physician
– Heimlich maneuver or similar procedure used to expel an obstruction from the throat

The DNR bracelet also informs a medical provider if you are not breathing, do not have a pulse or heartbeat, they will not:
– Perform chest compressions
– Insert an airway
– Administer cardiac resuscitation drugs
– Provide ventilator assistance
– Use a defibrillator

Having a DNR in place and wearing the bracelet ensures in an emergency everyone knows your wishes. A living will confirms your wishes about end-of-life care are honored.

We all know conversations about what should be done in an emergency and as your health changes can be difficult. Everyone who cares about you has their opinion. It is a valuable gift you can give to your family when you make your wishes known about the care that is important to you. A good way to ensure your wishes will be honored is by pre-planning with your loved ones and by involving your doctor.

Kathleen Weston
Director of Hospice Operations