Inglewood Care Centre Degree of Intervention Handbook for Residents and Families Index Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Beliefs, Values, and Wishes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Definitions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4-5 Degrees of Intervention o Degree 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 o Degree 2A . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6-7 o Degree 2B . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7-8 o Degree 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 o Degree 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 For Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Degree of Intervention Form . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11 For Inglewood Care Centre Updated February 2012 1 Introduction You alone have the right to decide what happens to your body when you become sick or injured. If ever there comes a time when you are incapable of expressing your wishes, a family member of friend may be asked to make decisions on your behalf. This means it is very important that everyone is aware of your wishes so the people you trust and medical professionals can make decisions that reflect what you would want. Deciding what health care interventions you want when you become ill or are injured can be very difficult. Decisions about medical care must be made according to your personal values and beliefs, but they must also take into account a realistic assessment of the risks and benefits of each treatment option. Some people will choose to prolong their lives even if it means being on a lifesupport machine. Other people will choose to limit medical treatment so they can focus on being comfortable and remain in familiar surroundings. Consider what is important to you and what your quality of life will be as a result of your medical decisions. The Degree of Intervention (DOI) form is your way of letting the staff at Inglewood Care Centre know what your wishes are. There are five degrees to choose from: Degree 1, Degree 2A, Degree 2B, Degree 3, and Degree 4. These degrees, as well as common medical procedures such as Cardiopulmonary Resuscitation (CPR), are explained in this booklet. First, it might be helpful to explore your beliefs, values, and wishes. 2 Beliefs, Values, and Wishes It can be extremely difficult for some people to imagine a future where they may be seriously ill, injured, or they are approaching the end of their lives. While it may be challenging to consider end of life care, outlining ahead of time what you want helps family members to be confident in the decisions they make on your behalf. Without explicitly knowing your personal wishes, your values, and your beliefs, those you love will be forced to guess what you would want which can cause a lot of anxiety. Some people may even second-guess their choices and feel guilty for not knowing exactly what you would want. It is up to you to let them know. Consider your beliefs and values—what is most meaningful to you? Perhaps you follow a particular religion or philosophy of life. You may simply feel a connection with nature, animals, music, or a lifelong hobby. It may be that your family and friends are most meaningful to you. Whatever it is that brings meaning to your life can bring comfort to you when you are unwell or nearing death. Try to imagine what you would like surrounding you in your last days. Would you like your family at your side? Would you like soft music playing? Would you like a priest to come visit you? Consider your wishes—what health care treatments would you consent to or refuse? There are many medical procedures available that are intended to prolong life. Some life support interventions include tube feeding, breathing machines, kidney dialysis, and CPR. These procedures will be described in the following pages. Even if you are unfamiliar with the medical terminology, you can express whether you would prefer invasive treatments that may or may not be successful, or comfort measures that allow you to remain in a familiar environment with family, friends, and staff members who know you. 3 Definitions Cardiopulmonary Resuscitation (CPR) – CPR involves massaging the heart by pushing on the breastbone and breathing artificially by mouth-to-mouth until an attempt can be made to restart the heart with drugs or electric shock. It is important to realize that CPR is a very invasive treatment—ribs are often fractured or broken during compressions. Although some residents of Residential Care Facilities who undergo CPR survive initially, only a small percentage actually leaves hospital. An even smaller percentage would be resuscitated to a state equal to or better than they had been prior to the episode. Often times the individual who has been resuscitated has a lower cognitive and physical functioning and potentially a much lower quality of life. If you have a serious ongoing health problem your doctor may advise you that CPR is not recommended because it would offer little hope of success. Feeding Tube – A feeding tube is used to give food and fluids through a tube into the stomach. The state of being fed by a feeding tube is called “gavage,” “enteral feeding” or “tube feeding.” There are two main types of feeding tubes: 1) A Nasogastric (NG) tube is inserted through the nose and down the throat to the stomach. 2) A Percutaneous Endoscopic Gastronomy (PEG) is placed directly into the stomach through a hole in the abdomen. A surgeon will guide the tube into place using a tube with a camera on it (an endoscope) directed down the patient’s throat. The feeding tube can feel uncomfortable and NG tubes may cause a feeling of choking. People (especially those with dementia) may attempt to pull the tube out and restraints or sedation may be required to stop this from occurring. There are also many risks involved such as diarrhea, cramping, vomiting, nausea, and infection and bleeding in the case of PEG tubes. Many feel that tube feeding can prolong suffering when a person is dying and it is not recommended for those who are near death. Further, studies have shown that people advanced in age who are very sick do not survive any longer with a feeding tube than without one. 4 It is also important to note that feelings of hunger and thirst are generally not present near the end of life. Most people will refuse even small amounts of food and drink. A lowering of fluid levels in the body is not painful for the person—the blood becomes concentrated and kidneys gradually stop functioning, reducing the perception of pain. Intravenous (IV) Therapy – An IV is a thin, plastic tube that is connected directly into a vein with a hollow needle in order to deliver liquid substances. IVs may be used to deliver medications such as antibiotics, for blood transfusions, or to simply replace fluids and electrolytes. While IVs are very helpful in some situations, when a person is nearing the end of their life it is not recommended they receive IV therapy. Providing fluids with an IV often results in more secretions in the breathing passage, making it difficult to breath and prolonging the duration of discomfort. Kidney Dialysis – Dialysis is a process where a special machine removes waste and excess water from the blood. This process is done primarily to compensate for lost or reduced kidney function—it does not fix the underlying problem that is affecting the kidneys. There are a few different types of dialysis, but one of the most common types, hemodialysis, must be performed at least 3 times a week and takes about 3 to 5 hours for each session. In addition, people need to be prepared for hemodialysis by undergoing surgery to enlarge a blood vessel (usually in the arm) in order to make the insertion of a catheter possible. Side effects include feeling faint or tired, and people must carefully regulate their diet. Ventilator – A ventilator is a machine that is able to breathe for you by pushing oxygen into your lungs and removing carbon dioxide from your body through a tube inserted in your airway. A ventilator does not treat a disease or condition and is only used for life support. Noninvasive methods, which are used when people require a ventilator only when sleeping, mainly include a nasal mask. Invasive methods require intubation (insertion of a tube in the throat), which for long-term ventilator dependence will normally be a tracheotomy (a surgically-made hole in the throat), as this is much more comfortable and practical for long-term care. The breathing tube in your airway may cause some discomfort and also greatly affects your ability to talk and eat. Ventilators also greatly restricts movement. 5 Degrees of Intervention The Degree of Intervention is used in the case of sudden collapse or terminal illness. It provides a guideline to the care team about what your wishes and preferences are. It is a document which can be changed should you change your mind, or whenever a situation warrants a change. Degree 1 – Supportive Care Supportive Care (Degree 1) involves medical and nursing care focused solely on keeping you as comfortable as possible. Invasive treatments would not be attempted. Medication is given for pain or fever, oral fluids and oxygen are administered as needed. Inglewood can provide a number of in-house comfort measures including oxygen and morphine. Supportive Care is usually requested by individuals who are in the last stages of an incurable disease (e.g. heart disease, dementia, cancer) and are close to death. Residents requesting Supportive Care will stay at Inglewood, close to friends and cared for by staff they know well. They are only transferred to hospital in cases of lacerations or hip fractures (as hospital treatment for these conditions is considered a comfort measure), or if it is decided that they cannot be safely cared for at Inglewood. Antibiotics are generally not prescribed although this is up to the physician’s discretion. CPR would not be attempted with Degree 1. Comfort measures Control of fever Transfer to acute care ER Pain relief Transfer to acute care only in event of laceration or hip fracture CPR Remain in comfortable and familiar environment Antibiotics for infection ICU Degree 2A – Therapeutic Measures in Long Term Care Therapeutic Measures in Long Term Care involves any treatment that can be given at Inglewood, but does not include transfer to hospital if that treatment is not working. For example, if you developed pneumonia, antibiotics would be given by mouth. If those 6 antibiotics were not strong enough to fight the infection, you would not be sent to hospital to receive intravenous antibiotics; you would instead be kept comfortable at Inglewood. Those who choose Degree 2A are usually choosing quality (i.e. staying in a familiar environment amongst friends) over length of remaining life. Families may request Degree 2A treatment for their relative who has advanced dementia, is frightened of hospitals, or is not able to cooperate with basic tests or treatments. Some residents have had a very negative and distressing experience during a prior hospital stay and may have expressed that they would not like to be sent there again. With Degree 2A, the doctor is contacted before a resident is sent to hospital. Similar to Degree 1, transfers to hospital would occur in the case of lacerations or hip fractures or if staff were unable to keep the resident safe and comfortable. CPR is not attempted with Degree 2A. Comfort measures Control of fever Transfer to acute care ER Pain relief Transfer to acute care only in event of laceration or hip fracture CPR Remain in comfortable and familiar environment Antibiotics for infection ICU Degree 2B – Therapeutic Measures in Acute Care Therapeutic Measures in Acute Care involves transfer to hospital if your illness is not responding to the treatments you are receiving at Inglewood. For example, if you developed pneumonia and antibiotics by mouth are not working, you would be sent to hospital to receive intravenous (IV) antibiotics. Degree 2B creates a sense of urgency for staff and, unlike Degrees 1 and 2A, the first step of action is to send you to hospital if treatments at Inglewood are not sufficient. However, you would not be admitted to the Intensive Care Unit (ICU). Like Degrees 1 and 2A, CPR is not attempted with Degree 2B. Comfort measures Control of fever Transfer to acute care ER Pain relief Transfer to acute care only in event of laceration or hip fracture CPR Remain in comfortable and familiar environment Antibiotics for infection ICU 7 Degree 3 – Maximum Therapeutic Effort Maximum medical treatment involves transfer to hospital and admission to the Intensive Care Unit (ICU) if a very serious illness occurs. ICUs are highly specialized places where patients receive the most complex and technologically advanced treatments including CPR and life-support machines. Treatments available in the Intensive Care Unit are often life saving for younger individuals who have had a major injury or a single serious illness. However, they are often less successful with elderly patients who have several serious health problems occurring at once. As treatment in the ICU is stressful and traumatic, you may decide against requesting maximum medical treatment. Persons with dementia who are placed in a hospital environment that is not adapted to their needs will often become highly confused and agitated, may be restrained or sedated, may refuse to eat, and can develop bed sores. Comfort measures Control of fever Transfer to acute care ER Pain relief Transfer to acute care only in event of laceration or hip fracture CPR Remain in comfortable and familiar environment Antibiotics for infection ICU Degree 4 – The resident or their representative may word their own request This option provides residents and their families or representatives with the opportunity to word their own request. This option may be suitable for a resident whose health is quite stable and who would like each medical situation to be assessed prior to making a decision. 8 For Families If your family member is incapable of expressing their wishes you must decide what they would have wanted, NOT what you want. It can be difficult to put yourself in their shoes and ignore your own values and the desire to keep your family member alive for as long as possible. Think about the quality of life they may have if certain medical interventions, such as CPR and feeding tubes, are used. It may help to reflect on how they responded to previous deaths of friends or family members—were they relieved that they did not suffer, did they say they would never want the end of their life to be that way? Do they dislike hospitals and would they prefer that their last days were in a more familiar environment? If you are unsure of their wishes, it may be helpful to talk with other family members or friends of the resident who may provide some useful insight. If your family member is still capable of having discussions about what he or she would want, we encourage you to engage in those discussions. Our social worker would be happy to help facilitate such a conversation. Consider their religious beliefs, if they have any. Most religious authorities who have addressed the issue of end of life care consider it morally acceptable to refrain from life-prolonging measures, such as a ventilator or feeding tube, if there is little hope of improving the quality of life. If a medical situation arises and you do not agree with the doctor and other medical staff, it is always important to fight for what you believe your family member would have wanted. The doctor does not have the power to impose his or her recommendations on the family. You can always get a second opinion from another doctor or specialist, or speak with an ethics committee. Similarly, your decisions can be contested if others believe you are not making decisions in accordance with what your family member would want and what is in their best interest. 9 INGLEWOOD CARE CENTRE DEGREE OF INTERVENTION The Degree of Intervention in the event of a sudden collapse or terminal illness for ____________________________________________________ shall be Degree ______________ Resident’s Name ___________________________ Physician’s Signature _____________________________ Resident or Designate’s Signature ___________________ Date ___________________________ Physician’s Signature _____________________________ Resident or Designate’s Signature ___________________ Date ___________________________ Physician’s Signature _____________________________ Resident or Designate’s Signature ___________________ Date Reviewed and Reaffirmed: DEGREE ONE: Supportive Care DEGREE TWO A: Therapeutic Measures in LTC Comfort Measures Pain Relief Control of Fever Oral Fluids, Oxygen Do Not Transfer to Acute Care (Exceptions include hip fractures or lacerations) Medication as Indicated (e.g., antibiotics) No Cardio-pulmonary Resuscitation DEGREE THREE: Maximum Therapeutic Effort Comfort Measures Pain Relief Control of Fever Oral Fluids, Oxygen Do Not Transfer to Acute Care (Exceptions include hip fractures or lacerations) No Cardio-pulmonary Resuscitation DEGREE TWO B: Therapeutic Measures in Acute Care Transfer to Acute Care/Emergency for Assessment Excludes Intensive Care No Cardio-pulmonary Resuscitation Transfer to Acute Care Intensive Care as Indicated Cardio-pulmonary Resuscitation DEGREE FOUR: The Resident/Designate or Physician may outline his/her own request. ________________________________________________________________________________ ________________________________________________________________________________ 1