Hospice Patients Alliance: Consumer Advocacy


FAMILY WORKSHEETS
QUESTIONS ABOUT END-OF-LIFE CARE



While each patient and family situation is unique, there are many questions which each family and patient will have to answer. Questions about the type of care to be provided, the location of the care, who will provide the care, will hospice services be used, what services will be accessed, and so on. Denying the approach of death does not put it off even one day, but it does cause added grief when important questions are left unanswered and turmoil results. Honestly recognizing the approach of death, whenever it may come, allows everyone involved to be better prepared for its actual arrival. Please take the time to think about these questions, discuss the issues openly among yourselves and ask questions from those health care professionals you may speak with, especially your Attending Physician. You may wish to use these questions as starting points for open discussion with your physician.

THE ILLNESS


1. What is the nature of the terminal illness diagnosed by the Attending Physician? Specifically, what are the symptoms of this disease and realistically what symptoms will your loved one be likely to experience?
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2. In the physician's opinion, what objective signs or subjective symptoms indicate that the patient may actually pass away within six months or less, as required by the laws governing accessibility to hospice care?
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THE PLAN OF ACTION & PERSONAL WISHES


3. Have you openly discussed your loved one's wishes about end-of-life care? If not, why not? And if you find it difficult to do so, have you spoken with your physician, RN case manager or a social worker about your concerns?
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4. Does he or she want to be resuscitated or is a Do-Not-Resuscitate Form Filled Out? If so, does the physician and hospice have a copy?
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5. Does he have specific wishes about how care should be provided when his health declines? If he can no longer communicate his wishes, who is legally authorized to make decisions on his behalf, and if that person is unavailable, who else can make decisions if he can no longer communicate his wishes?...i.e., has he filled out a Medical Durable Power of Attorney Form?
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6. For purposes other than medical issues, has anyone been given a Power of Attorney to act on behalf of or sign for the patient if he is unable to do so? (For checks, bank transactions, and other legal decisions). Has a written and valid Will been made out which clearly specifies your loved one's wishes regarding the disposition of his or her estate? Do you and other family members have a copy of the Will?
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STAYING HOME


7. Is it important for your loved one to stay at home with family till the very end? If so, how many people in your family or friends are realistically going to be there to help with caring for him when the need arises?
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8. Whatever number of potential care givers you have available, is it enough to cover your loved one's needs for care...24 hours in a day, for days or several weeks?
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9. Do you know any health care professionals as friends or in your family who can offer their professional insight and advice if necessary to help you understand certain situations which might arise? Are they willing to actually help provide bedside care?
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10. Are you going to use a hospice to help your loved one at home? If so, have you spoken with all the hospices in your area to compare services? Do you know anyone who has had hospice services in your area, and if so, what do they have to say about the different hospices?
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11. If your loved one is determined to stay at home till the very end, will the hospice send out nurses as needed to help keep your loved one home? If not, will another hospice promise to do so? What will you do if the hospice doesn't send out the nurses needed to keep your loved one at home?
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12. Are children going to be visiting in the home, and if so, how are you going to store medications so that potentially dangerous medications are kept out of their hands? Do you have a locked cabinet for medication storage or is there an inaccessible area where medications may safely be kept? Do you know the telephone number for your local poison control center? If not, have you contacted your local hospital to find out the local telephone number?
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13. If strong narcotic medications or sedatives may be used for symptom control, are there any friends or family members who have a problem with substance abuse and are or have been known to over indulge in alcohol or use illegal drugs? Will you have in place an effective method to prevent these individuals from getting to the patient's medications and taking them secretlyl? Will you keep them locked up to prevent others from accidentally or purposefully taking them?
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14. Do you have an area in the home where privacy can be maintained while bedside care is being provided? If not, can you screen off an area to maintain privacy?
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15. Is there agreement among the family members about how care is to be provided? Are there any important disagreements among the family members about care to be given or not given?
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HOSPICE SERVICES


16. Are you aware of all the services which hospices are required to provide for your loved one and your family? ________________________________________________________________________

17. Are you aware that all services needed to meet your loved one's needs and the family's needs are required to be provided on a 24-hour basis, 7 days per week?
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18. Are you aware that hospice services are governed by federal and state laws which specify uniform standards of care for hospice which all licensed hospices must meet?
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19. Are you aware that hospices must inform you VERBALLY as well as in writing, of all services which you may be entitled to receive? In other words, they must tell you about all services which they are required to provide.
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20. Have your spoken with friends, relatives or acquaintances who may have used some of the hospices in your area? Does the hospice you are considering using actually provide all services you are entitled to receive?
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21. Have you read any literature about hospice services? Have you read all the literature handed out by the hospice? Have you read all contracts and papers which the hospice required you to sign before enrolling your loved one in the hospice?
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THE PHYSICIAN


22. Is your loved one's Attending Physician someone who you've known for a lengthy period? Do you know any families who've had this physician directing end-of-life care for their loved one?
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23. Is this physician an expert in end-of-life care or a member of the American Academy of Hospice and Palliative Medicine?
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24. How does this physician communicate with you and your loved one? At office visits, do you have an opportunity to ask questions and are your questions answered adequately? What has the physician told you about your loved one's current status and future prognosis?
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25. Has this physician respected your loved one's wishes regarding medical decisions to be made or have you felt imposed upon?
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26. What Medical Board certification does this physician have? How much experience does this physician have in providing medical care for the terminally ill?
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27. Are you satisfied with the services this physician and office staff have provided to you up to this time? When you've called to ask questions to this physician, have you been able to get the physician's responses in a timely manner, or have you had to repeatedly call in order to get a response?
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28. If you're dissatisfied with this physician, are you aware that your loved one always has the right to change physicians?
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PAIN & RELIEF FROM PAIN


29. Is your loved one in pain or suffering from various symptoms right now? If so, what actions has your Attending Physician taken to alleviate this suffering?
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30. Is your Attending Physician experienced in treating terminal illnesses or would another physician be preferable at this point? If your Attending Physician is experienced with terminal illnesses, is he or she a member of the Academy of Hospice and Palliative Medicine or an actual or former hospice Director?
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31. If your loved one has cancer, does your Attending Physician subscribe to the standard protocols for treating pain which were established by the U.S. Department of Health & Human Services, Department of Public Health and published in the Clinical Manual for the Treatment of Cancer Pain? (Any physician experienced in treating pain in those suffering from cancer will immediately know which manual this is and what it says about treating pain). If you don't know the answer to this question, have you directly asked your physician if he or she does agree with this protocol? (If he does not, you may have great difficulty achieving pain-control and comfort for your loved one).
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32. If your loved one has cancer pain that has been difficult to relieve, has your physician suggested or mentioned palliative chemotherapy or radiation for the purpose of relieving that pain?
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33. If your loved one has pain related to diseases of the bones or nerve involvement due to AIDS or other diseases, is your physician willing to explore various alternative methods of treating such pain? What has your physician told you about how he plans to treat such pain? Is your physician of the belief that large doses of narcotics alone are sufficient to alleviate the pain in bone or nerve-related pain? If so, will your loved one suffer needlessly or die prematurely because narcotics alone are insufficient to treat such pain?
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34. If your loved one is experiencing severe abdominal pain, has any nurse or physician checked for bowel impaction or severe constipation? If there is the possibility of impaction, what has been done to remove this painful condition?
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35. If your loved one is experiencing severe abdominal pain and there is no bowel impaction or severe constipation, is the pain possibly caused by abdominal spasms? If narcotics are ineffective in relieving this pain, has the physician ordered medications to relieve abdominal spasms? Has the physician even considered if abdominal spasms are occurring?
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36. If your loved one is experiencing any sort of pain (which has not been relieved by the current use of medications or other interventions), what is the plan for relieving such pain? Have dosages been adjusted or other medications been ordered? Are there any special medical interventions which may be used to assist in relieving the pain?
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