Stopping eating and drinking

VOLUNTARY STOPPING EATING & DRINKING This paper addresses questions about stopping eating and drinking as an option to hasten death. The U.S. Supreme Court has affirmed the right of a competent individual to refuse medical therapies and this includes food and fluids. This choice is also commonly accepted in the medical community. One of the advantages of this decision is that you may change your mind at any time and resume eating and drinking. Compassion & Choices of Washington highly recommends that you call and be matched with a volunteer who can provide support through What does it mean to stop eating and drinking? To voluntarily refuse to eat food or to drink liquids, with the understanding that this will result in death. If food and fluids are taken through a stomach tube, the decision would be to stop this Once patients begin this process, they often express a sense of peace that they can finally “stop fighting.” Some patients even describe a sense of “euphoria” or pleasant lightheadedness. Researchers believe there is an analgesic effect caused by dehydration that may explain this response. With dehydration, people often need less pain medication, have less vomiting, and breathe more easily due to decreased congestion. Most people begin to go in and out of consciousness by the third day, and later become comatose. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable. They can be alleviated with mild sedatives or other techniques. I don’t like the idea of not drinking – can’t I just stop eating? A person can live for a very long time without eating, but dehydration (lack of fluids) speeds up the process. Dying from lack of food alone can be more prolonged and uncomfortable than If a person stops eating and drinking, death may come as early as a few days but more commonly one to three weeks. If the patient continues to drink, the process may take even longer. It is difficult to predict exactly when the end will come – this depends on the person’s general condition, age, il ness and other factors. It seems like this would take a lot of willpower. Does it? This process is not for everyone. It takes some determination, but we find that people who make this choice are ready to “let go” and find the process easy. We recommend that all medications be stopped except for those for pain or other discomfort. Stopping medications for heart problems or diabetes, for example, may speed up the process. It is a good idea to talk with your physician about all your medications. What about my friends and family – what will this be like for them? We suggest that you talk with your close family members and friends early about your wishes and why you may want to take this course. It may be difficult for some to understand, but most people are willing to support their loved one in whatever they choose. Compassion & Choices of Washington volunteers are available to support your friends and family during this time. What kind of help will I need? ♦ You cannot do this alone. You will need the care of friends, family, or other caregivers during this process. If you reside in a care facility, you will need the agreement of the staff to ♦ Your physician is also important. Talk with him or her and ask if a sedative and/or pain medication will be available to keep you comfortable. ♦ If you are already receiving hospice care, your nurses can help you prepare. If you are not on hospice, ask your physician for a referral to a local hospice provider. Usually hospice will be willing to provide supportive care once you start the process. They often do this even if a person does not meet their usual criteria for a “six-month prognosis.” ♦ If your illness is not one that is likely to cause death within six months, we suggest that you be evaluated for depression and decision-making capacity by a mental health provider. This will reassure family, physicians, and others that your mental status is sound and this decision ♦ Compassion & Choices of Washington will be available to counsel you and offer information and support to you, family, friends, and caregivers. If necessary, we can advocate for you with the nursing facility, physicians, and other care providers. What should I do before I start? We suggest the following: ♦ Talk with friends and family members who might care for you during this process. Their ♦ Talk with your physician and/or hospice nurse to let them know of your plans. Ask if they will be willing to provide medications to keep you comfortable. ♦ Arrange for a mental health evaluation if you are not “terminal.” ♦ Complete an Advance Directive stating in writing that this is your wish. Have your physician sign orders to withhold life-sustaining therapies and all resuscitation efforts. ♦ If you reside in a care facility, discuss your wishes with the staff and nursing director. You will ♦ Complete all your business/financial tasks, make funeral/memorial plans, and say your General Information on Stopping Eating and Drinking Managing Symptoms (see Information for Caregivers) Hunger and thirst tend to be experienced more by those who have had a healthy appetite up until they start this process. Patients who are near death have usually decreased their intake of food and fluids already, and tend to experience little or no hunger and only minimal thirst. A patient near unconsciousness will likely have no symptoms during the process. The more water the patient takes in, the slower the process will be, and it may be more uncomfortable. Offering fluids, but not leaving a glass by the bedside is a good idea. However, if the patient chooses to drink, fluids cannot be withheld. Agitation and delirium have occurred, but rarely. Hospice nurses and the patient’s physician can make recommendations for treating these symptoms. Medications for pain and sedation should be available in a form other than by mouth before the patient starts the process (suppositories, injection, and skin patch.) Liquid medications such as morphine can be applied into the space between the cheek and gums with a syringe, and will absorb slowly. Suggest to the caregivers that medications should be given around the clock – and not withheld as the patient slips into unconsciousness. Note: Morphine is a drug that decreases the sensation of thirst. If the patient does not have morphine prescribed, suggest the caregivers request some from the patient’s physician. Some medications increase dry mouth. Suggest the patient and caregiver review all the patient’s medications with the physician or hospice nurse, and eliminate those that might contribute to thirst or dry mouth. See chart of Stopping Other Medical Therapy Suggest that the patient stop their diabetic or heart or blood pressure medications in addition to eating and drinking. This should not cause them any discomfort. Insulin dependent diabetics usually die within a few days when not given their insulin. Hospice If the patient is already on hospice, include the hospice nurse in the discussion, and encourage the caregivers to contact the hospice nurse whenever they have concerns. Hospice staff are usually familiar with caring for patients who stop eating and drinking. If the patient is not on hospice, request a referral to hospice from the physician, and explain that the patient will meet the six-month criteria once they stop eating and drinking. There is a Medicare Billing Code for “Voluntary Starvation” – it is 307.1 – and hospice can use this to bill Problems have sometimes occurred when the patient decides to stop eating and drinking and resides in a nursing home or other care facility. It is important that the patient and family (or friends) meet with the facility director or supervisor to review the patient’s care needs, and to get agreement before starting the process. Your role will be as an advocate for the patient, making sure that his/her wishes are honored. Call Compassion & Choices of Washington for a volunteer who can help advocate and support you through this process. Recognize that not feeding a patient may be difficult for some staff members. Be understanding but firm that you expect the staff to honor the wishes of the patient. They may exert subtle pressures (stopping by the patient’s room with food or a drink) or act covertly to get the patient to eat or drink. You may need to be vigilant. The following may be helpful when the patient is in a care facility. ♦ Post a sign on the wall near the patient’s bed saying Nothing By Mouth or No Food or Fluids ♦ If the patient has had a feeding tube, have it removed (staff members have been known to feed the patient against his or her wishes through the tube.) ♦ Post a copy of the patient’s Advance Directive somewhere prominent in the room. ♦ Check in with the director or supervisor frequently to see how things are going and if there are ♦ The facility may want to have the patient evaluated for decision-making capacity. It is a good idea to agree to this, as it reassures the facility staff. ♦ Request hospice – nurses will visit the patient in the facility and provide supervision and support If you have continued problems, you may want to contact the Long Term Care Ombudsman in your area. Call Compassion & Choices of Washington for an informational flier called What is a Sample language for an initial discussion with your physician about I want to have an honest discussion with you about how I can maintain control of my life as my illness progresses. Quality of life is more important to me than the number of days I have left to live. I am concerned about _________________________________ that I may be forced to endure. Suffering, for me, includes_______________________. When I determine that my suffering is beyond what I can tolerate, and I can only anticipate a worsening of my symptoms, I plan to voluntarily stop taking medications, food and fluids. I would like your support and a hospice referral to keep me comfortable during my last days at home. I want my pain to be kept under control and I want to be kept completely comfortable until my inevitable death – even if this means I might sleep all the time. In the unlikely event that I do not die quickly and my care places a burden on my family that cannot be managed by home hospice support, I would like to be transferred to an in-patient facility and receive hospice care there. I need to know that this option will be available to me at the time of my choosing. I see the option I have described here as preferable for my family and for myself. I have discussed this plan with my loved ones and have their support for whatever I decide to do. I need your support of this plan for my peace of mind so that I can proceed with enjoying whatever time I have left, free from fears about the decline in the quality of my life and suffering I consider to be intolerable. Specific questions: 1. May I count on you to support me if I proceed with my plan to voluntarily stop medications, food, and fluids - when and if I decide that my suffering has become unbearable? 2. Would you refer me to hospice now, prior to my initiating my plan, in order to facilitate a 3. Do you see any barriers that might prevent me from carrying out this plan? 4. If you feel that you cannot, or will not, support me in this plan, please refer me to a Most family members and friends want to know what to expect when their loved one stops eating and drinking. The following information is taken from our experiences at Compassion & Choices of Washington and from the medical literature. Symptoms A person may experience some or none of the following. Possible treatments are suggested. Offer small sips of fluid, crushed ice or ice chips, hard candy, or small bites of fresh fruit. Use humidifier in room. Ask MD for artificial saliva, oral sprays. Give morphine if ordered for pain – it can also relieve thirst. Offer mouth rinse (to spit out): saltwater, hydrogen peroxide and water, mouthwash (nonalcoholic). Brush teeth, tongue, and gums with toothbrush. Remove debris from mouth. Swab mouth with moist swab. Have patient suck on edge of wet cloth. Use lip moisturizers. Avoid Glycerin, which is drying. Ask MD for liquid Benadryl or Viscous Xylocaine. Avoid medications that cause dry mouth – see chart, or ask MD. Use humidifier in room. Avoid frequent bathing. Use unscented moisturizer on skin. A soft mattress or extra padding on the bed may reduce discomfort. Offer distractions. Avoid cooking smells in room. Offer small bites of light food (dry toast, fresh fruit, etc.) Hunger will pass quickly. (Rare) Offer distractions. Avoid cooking smells in room. Ask MD for antinausea suppositories. Encourage rest and sleep between periods of activity (if any). Help patient find comfortable position by turning, placing pillows, etc. Obtain a bedside commode or use a bedpan – patient will only urinate small amounts. Weakness (Rare) Give sedatives on a regular schedule. Talk with patient, read to them, provide music, etc. Medicate for pain. The patient will usually become sleepy and more lethargic each day. Some patients become unconscious after a few days, others stay clearheaded and awake till the end. Care for the Caregivers Caring for the dying is exhausting, both emotional y and physically. The patient will not need you at the bedside every minute. It is important to recognize that many dying patients withdraw from the world and desire only a little contact with others. Sometimes all they require is simple and occasional reassurance. Pace yourself, and ask other family members and friends to “spell you.” Hospice can usually provide volunteers to sit with the patient for several hours at a time, so you can Medications that May Cause Dry Mouth or Thirst * Medications are often prescribed to treat conditions outside of the category listed on this chart. includes tricyclics; newer SSRIs , i.e., selective Desryl -Trazodone serotonin reuptake inhibitor; and others Parkinson’s or the side effects of other meds. Artane -Trihexyphenidyl


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