Check Your Advance Directives!

One should be aware that in senior communities they may have policies that differ from one's final directives. Therefore, it is best to request that these final directives be signed in advance so that the organization can follow them.

For dementia, one can put in final directives that a feeding tube should not be used. This enables one's healthcare proxy to enforce this request.

Since the passage of HIPAA (Health Insurance Portability and Accountability Act) we've all been signing new forms at the doctor's office or at the hospital. It has come to our attention that we might need to check our advance directives to be sure our proxies or agents will be authorized to have access to all the medical information they will need to execute our wishes. Local attorneys do not know of any instances of such difficulties occurring, but they suggest making appropriate changes the next time you review or update your directives.

We are also affiliated with or previously known as:

• Compassion & Choices

• End-of-Life Choices

• Hemlock Foundation

• Caring Friends

• Compassion in Dying

• Hemlock Society

National Sites

• OTHER C & C CHAPTERS

• COMPASSION & CHOICES

• BOULDER CHAPTER

Hospice Tips

What Is Hospice?

Hospice care is provided by a team of professionals and volunteers trained to address the medical, social, emotional and spiritual needs of a patient who is in the terminal phase of an illness and is no longer seeking life-prolonging treatment. A physician makes a referral when the prognosis is determined to be six months or less.

The hospice team provides what is known as "palliative" care, which focuses on eliminating suffering and providing comfort and support. The team is also dedicated to insuring a dignified death. Hospice services will be provided in your own home if you have a caregiver. If you do not, hospice services will be delivered within an inpatient setting.

Obtaining a Hospice Referral

If you have not already discussed hospice with your physician, we suggest that you do so. You may not need hospice right now, but we strongly believe that hospice can be a great help in assisting people to manage pain and other symptoms. In addition, should you choose to hasten your death, there are advantages to being on hospice at the time. (Your Client Support counselor may have already discussed these with you. If not, ask.)

To help you have this discussion with your physician, the following sample conversation may serve as a guide: "I want to have a conversation with you about how I can maintain control of my life as my illness progresses. I appreciate all you have done to help me fight this disease, but I have come to a place where I want to redirect my remaining energy. The quality of my life is much more important to me than the number of days I have left. I believe it is time to talk about a referral to hospice and "comfort care" only. I want my pain to be kept under control, and I want to be kept comfortable until my death – even if this means I might sleep all of the time. If I am unable to find a caregiver, I would like a referral to an inpatient facility with hospice support. I'm no longer interested in traditional or experimental procedures designed to prolong my life. At this time, I am seeking only one thing: the peace of mind that comes with knowing hospice will be available to me at the time of my choosing. With a referral in place, I can enjoy whatever time I have left, free from the fear of intolerable suffering."

In addition, you might want to add the following:

"If my pain or suffering becomes intractable, even with traditional pain management, I want the option of total sedation. [1] Are you willing to honor this request? If you cannot support this request, please refer me to a physician who will."

Finding a Hospice

The following serves as a guideline in your search for hospice. You may begin with the following, even if you have not yet received a referral:

• Ask friends/family who have had experience with hospice in your community. A personal recommendation is a good place to begin.

• Ask the physician who refers you if he or she prefers a particular one. (This does not mean you have to choose that one.)

• Both not-for-profit and for-profit hospices provide good care.

• Some insurance companies pay for only a particular hospice. When you contact a hospice, ask if they take your insurance.

• When researching hospices, you may notice a reference to "NHPCO." This stands for the National Hospice and Palliative Care Organization. This is a membership organization and does not mean that their care will be better than at non-member hospices.

Once you've found a hospice, call (or have a family member call) and ask to speak to an intake person. Make sure you have paper/pen to take notes. Explain the situation, tell them where you live, and ask the following questions. Listen for concern, kindness and thoughtful responses.

1. Do you see patients in my area? If not, which hospice(s) do?

2. If you do not have a caregiver in your home (or if you might need more care than can be delivered at home), ask: Where do you admit your inpatients?

3. How long have you been in business? What services do you provide?

4. As a hospice patient, may I continue to see my own doctor?

5. What is your weekend and night coverage?

6. Are you affiliated with any particular religious institution? If so, ask how that will influence the care they deliver and the end-of-life options available? (Do NOT mention any plans you may have to hasten your death. That conversation may or may not take place with the appropriate hospice professional at a future time.)

7. What is your philosophy on pain management? (Listen for words that make sense to you, like: "Our goal is to keep the person as pain-free as possible. This is almost always possible." Be concerned if they say something like, "Not all pain can be controlled, but we do our best."). A good hospice has good pain management.

8. Would you provide "palliative sedation" if my pain or suffering become impossible to manage?

Making the Decision

Think of yourself as a consumer. The "product" is peace of mind at a very vulnerable time. If you feel very positive about the first hospice you speak with, then you simply ask, "What is the next step?" If, however, you would rather look into other options, simply thank them. Then, after you have completed your search, compare the notes you have taken. If you are able, talk with a friend or family member and seek their input. If you need clarification on a point, do not hesitate to call that particular hospice back.

These are the people who will play a vital role in the last months and days of your life. You want to feel confident that you will be in good hands and that you will be treated competently, respectfully and compassionately.

Once You Have Chosen a Hospice ...

• A nurse and/or social worker will come to your home and complete an intake interview. This visit may last more than an hour. Make sure any friends or family who will be involved in your care are present.

• Take care of yourself. The interview consists of many questions and forms to sign. Depending on your status that day, it may be exhausting. If you become too weak or tired to pay attention, ask them to return the next day.

• If you have a preference for a male or female nurse, let them know.

• When you meet your nurse for the first time, describe any special needs or concerns you have. Be clear about what you want. Do you like to be kept informed? Are you uncomfortable discussing feelings? Do you have specific fears about pain, etc.? Are there family issues that are contributing to your stress?

• Read through the materials you are given. Make sure everyone involved in your care reads them. Feel free to ask questions when your nurse visits, or call the hospice in between visits.

• You are in charge. If you want the nurse to come more or less frequently, tell him/her. If you are uncomfortable with the nurse who has been assigned to you, call the hospice and ask to speak with the nursing supervisor. Explain your concerns.

• If you find that the hospice you have chosen is not being responsive to your needs, even though you have brought this to their attention, you may always "fire" them and find a new one. (This rarely happens, but it is your right.)

If a Crisis Develops

Because you are now a hospice patient, the response to "life-threatening" situations may differ from what would happen in an earlier stage of your illness. For instance:

• Hospice should be called BEFORE calling 911. Make sure anyone staying in the home knows this. Post the hospice number near every phone.

• Hospice will provide you with an out-of-hospital do-not-resuscitate order form. If emergency services are called to your home, this document will inform them that they are not legally bound to perform CPR or resuscitation efforts.

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Immunity Granted to

Colorado Caregivers

Members of the Colorado chapter of Compassion & Choices joined forces with other like-minded organizations to help shepherd the passage of Colorado SB 102. The Act, which was signed by Governor Owens on April 4, became effective on July 1, 2006, and amends the state's current manslaughter statute 18-3-104 by stating, "This section (manslaughter) shall not apply to a medical caregiver with prescriptive authority or authority to administer medication who prescribes or administers medication for palliative care to a terminally ill patient with the consent of the terminally ill patient or his or her agent."

Simply put, the new law grants immunity to a medical caregiver who unintentionally causes the death of a terminally ill patient as the result of efforts to relieve the patient's pain by either using increased doses of medication or administering analgesics the physician might otherwise be reluctant to try. Adequate pain management in the United States is extremely poor; 50% of patients who die in institutions experience pain that could be treated, but isn't.

Barriers to proper pain control include concerns over government scrutiny when prescribing Schedule II drugs, the possibility of patient addiction, and the fear that aggressive efforts to relieve pain might unintentionally cause a patient's death. While there is still a long way to go in improving end-of-life care in Colorado and elsewhere, SB 102 at least removes one of the barriers, and hopefully will encourage more Colorado physicians to be more aggressive in their efforts to relieve patient suffering.

(This item is repeated in the "News" section of this Web site)

From Our National Office

Barbara Coombs Lee tells us about the transformational briefing the national office recently held on Capitol Hill.

As you may recall, the June 19th briefing was designed to educate congressional staff and other policymakers on the connection between end-of-life care and health care reform. Compassion & Choices has emerged as a leading force behind two bills - one to create a Medicare billing code for end-of-life consultation, and another - the "Advance Care Planning and Compassionate Care Act of 2009" to secure and facilitate end-of-life choice under federal health care policy.

We invited AARP and American Academy of Hospice and Palliative Medicine (AAHPM) to join us, and staff from key congressional committees came to hear from three acknowledged leadership organizations. The briefing room was so crowded it was standing room only. AARP President Jennie Chin Hansen and Howard Tuch, M.D., AAHPM policy director, shared the podium with Kathryn Tucker, Compassion & Choices Legal Director.

Two things were clear:

1. Compassion & Choices has come of age as a policy leader on the national stage. I don't mean getting our name in the newspapers (although we do, increasingly). I mean we're recognized as an authoritative and influential voice on the key issue previously missing in the public debate. Policymakers are listening because they acknowledge the importance of end-of-life care and choice. And they are listening to us because Compassion & Choices uniquely bridges the divide between empowering citizens and educating doctors.
2. We create positive change that wouldn't happen without us. Jennie Hansen from AARP spoke to the briefing audience - unprompted by us - about how our litigation in the Bergman case to establish under-treated pain as a form of elder abuse, and work to pass the California Palliative Care Education and Right-to-Know Acts were "game changers" for physician accountability and establishment of patients' rights to excellent care. She could have said the very same thing about the vast impact of our work in Washington State, Montana, Connecticut, New York and other states.

This is a watershed moment --- the fruition of many years of hard work, much of it done in relative obscurity. That's no longer the case. And our powerful and historic impact owes its thanks in large part to your steadfast support.

As the debate over health care reform continues to unfold, I encourage you to take pride in knowing that Compassion & Choices plays a critical role. That means you play a critical role as well. And a great many very good things will happen as a result.

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[1]  Total or palliative sedation is a medically-induced coma. The patient becomes completely unaware of any suffering. Sometimes the coma is for a brief period of time until symptoms can be brought under control. At other times it continues until death.