Advance medical directives Introduction

What are advance directives? Advance directives are legal documents that allow patient to plan and make their own end-of life wishes in the event that they are unable to communicate.

Advance directives generally fall into three categories: living will, health-care proxy and power of attorney.
A living will describes patients wishes regarding medical care. With a medical power of attorney patient can appoint a person to make healthcare decisions for patient in case patient unable to speak for them self.

Living will: This is a written document that specifies what types of medical treatment they should get when the individual become incapacitated. A living will can be general or very specific. The most common statement in a living will is to the effect that,

If I suffer an incurable, irreversible illness, disease, or condition and my attending physician determines that my condition is terminal, I direct that life-sustaining measures that would serve only to prolong my dying be withheld or discontinued.

More specific living wills may include information regarding an individual's desire for such services such as

analgesia (pain relief), antibiotics, artificial (intravenous or IV) hydration, artificial feeding (feeding tube), CPR (cardiopulmonary resuscitation), life-support equipment including ventilators (breathing machines), Do not resuscitate (DNR).

Medical (healthcare) power of attorney (Health-care proxy) A medical power of attorney is the advance directive that allows patient to select a person he or she trust to make decisions about their medical care if the patient are temporarily or permanently unable to communicate and make decisions for them self. This includes not only decisions at the end of their life, but also in other medical situations. This document is also known as a healthcare proxy, appointment of healthcare agent or durable power of attorney for healthcare. This document goes into effect when the physician declares that the patient is unable to make their own medical decisions. The person selected can also be known as a healthcare agent, surrogate, attorney-in-fact or healthcare proxy. 1

Durable power of attorney (DPOA): Through this type of advance directive, an individual executes legal documents that provide the power of attorney to others in the case of an incapacitating medical condition. The durable power of attorney allows an individual to make bank transactions, sign social security checks, apply for disability, or simply write checks to pay the utility bill while an individual is medically incapacitated. DPOA can also specifically designate different individuals to act on a person's behalf for specific affairs. For example, one person can be designated the DPOA of health-care or medical power of attorney, similar to the health-care proxy, while another individual can be made the legal DPOA

Importance of an advance directive

Advance directives were developed as a result of widespread concerns over patients undergoing unwanted medical treatments and procedures in effort to preserve life at any cost. As outlined in the following section (history of advance directives), remarkable efforts were made to institute advance medical directives as a component of medical care in the United States over the last few decades. From a practical standpoint, medical directives and living wills facilitate a person's medical care and decision making in situations when they are temporarily or permanently unable make decisions or verbalize their decisions. By having previously documented personal wishes and preferences, the family's and physicians' immense decision-making burden is lightened. At the same time, patient autonomy and dignity are preserved by tailoring medical care based on one's own choices regardless of mental or physical capacity. Instructive directives (advance directives, living wills, and health-care proxy designation) are completed by a person with decision-making capacity. They only become effective when a person loses his/her decision-making capacity (mentally incapacitated). While a person maintains ability to make decisions, he/she is the ultimate decision-maker rather than the health-care proxy or surrogate decision-maker.

History of advance directives

Advance directives began to be developed in the United States in the late 1960s. The U.S. federal government has validated state laws on advance directives through the 1991 Patient Self- Determination Act. And the U.S. Supreme Court has handed down an opinion acknowledging the congruence of the Constitution of the United States with state laws on the right to designate future medical treatment.

The current situation

In the United States, four out of every five adults has no advance directive, a situation that some have likened to taking your car to the mechanic and saying, "I think it needs a tune-up, but if you find something really wrong with it, just go ahead and fix it, even if it won't run afterward? And by the way, please charge me for the work and if I can't pay for it, I'm sure my estate will!" When asked what would provide a good death, the majority of Americans answer, in essence; "Quick, painless, at home, and surrounded by family."

When do advance directives become helpful?

Advance directives become active when a patient is no longer able to make his/her own healthcare decisions or becomes mentally incapacitated. Until such point is reached, the patient is the ultimate decision maker regarding their health. Some common scenarios where these directives can help with the decision making process are

coma persistent vegetative state, severe brain injury strokes advanced Alzheimer's disease or other forms of dementia, Critical medical illness affecting mental capacity.

Advance directives not only help with decision-making in times of incapacity, but they can also clarify one's preferences during times of uncertainties while still cognitively intact. At times, deciding whether to accept or decline a treatment may overwhelm a person and cast uncertain on their judgment. By referring to previously delineated preferences based on overall goals of care, such decisions may become simpler to make as smaller components of a bigger picture.
Life-sustaining treatments are specific medical procedures that support the body and keep a person alive when the body is not able to function on its own. Making the decision about whether or not to have life-sustaining treatments can be a difficult decision depending on your situation. You might want to accept life-sustaining treatments if they will help to restore normal functions and improve your condition. However, if you are faced with a serious lifelimiting condition, you may not want to prolong your life with life-sustaining treatment. The most common end-of-life medical decisions that you, family members or an appointed healthcare agent must make involve: Cardiopulmonary Resuscitation (CPR) Do Not Resuscitate Order (DNR) Do Not Intubate Order (DNI) Artificial Nutrition and Hydration What is cardiopulmonary resuscitation (CPR)? Cardiopulmonary resuscitation (CPR) is a group of procedures used when your heart stops (cardiac arrest) or breathing stops (respiratory arrest). For cardiac arrest the treatment may include chest compressions, electrical stimulation or use of medication to support or restore the hearts ability to function. For respiratory arrest treatment may include insertion of a tube through your mouth or nose into the trachea (wind pipe that connects the throat to 3

Life-sustaining treatments

the lungs) to artificially support or restore your breathing function. The tube placed in your body is connected to a mechanical ventilator. What is a Do Not Resuscitate (DNR) order? A Do Not Resuscitate (DNR) order is a written physicians order that prevents the healthcare team from initiating CPR. The physician writes and signs a DNR at your request or at the request of your family or appointed healthcare agent if you do not want to receive CPR in the event of cardiac or respiratory arrest. The DNR order must be signed by a doctor Otherwise, it cannot be honoured. DNR orders: Can be cancelled at any time by letting the doctor who signed the DNR know that you have changed your decision. Remain in effect if you transfer from one healthcare facility to another. However, consult the arrival facilitys policy to make sure. Also, the DNR may not be honoured if you are discharged from the facility to your home if your state does not have an out-ofhospital DNR policy. May not be honoured during surgery but this is something very important to discuss with your surgeon and anaesthesiologist before surgery so your wishes are honoured. Should be posted in the home if that is where you are being cared for. If there is no DNR order, the healthcare team will respond to the emergency and perform CPR. The team will not have time to consult a living will, the family, the patients healthcare agent or the patients doctors if they are not present. What is a Do Not Intubate (DNI) order? When you request a DNR order, your physician may ask if you also wish to have a do-not-intubate order. Intubation is the placement of a tube into the nose or mouth in order to have it enter your windpipe (trachea) to help you breathe when you cannot breathe adequately yourself. Intubation might prevent a heart attack or respiratory arrest. Refusal of intubation does not mean refusal of other techniques of resuscitation. If you do not want mechanical ventilation (breathing), you must discuss intubation because it may be included as part of a DNR order. Even if you have completed a DNR order that does not mean that you have refused to be intubated. If you do not want life mechanically sustained, you must discuss your decision about intubation with your doctor. What is artificial nutrition and hydration? Artificial nutrition and hydration are treatments that allow a person to receive nutrition (food) and hydration (fluid) when they are no longer able to take them by mouth. This treatment can be given to a person who cannot eat or drink enough to sustain life. When someone with a serious or lifelimiting illness is no longer

able to eat or drink, it usually means that the body is beginning to stop functioning as a result of the illness. Can healthcare professionals refuse to honour my advance directive? Some healthcare professionals may choose to ignore what is written in your living will if they believe that what is written is against your best interest or for moral or religious reasons. In some cases there may be a misunderstanding of the law, medical ethics or professional responsibilities. It is important for you to know if your doctor will honour your request. Bring your completed living will to your next healthcare appointment and ask your doctor if he or she has questions or concerns. Does my advance directive include my wishes about organ donation? Some states may include your wishes about whether you want to be an organ donor as part of the advance directive. If it is not included, you can still write down your decision about organ donation. However, you should fill out a specific form for that purpose.

How can one obtain and prepare living will and advance medical directive forms?
Preparing documents for a living will and advance directive can be done at any time during an adult person's lifetime. As one's preference can naturally change during one's life, these documents can also be amended and modified to reflect the changes. Obtaining medical advance directive documents is simple. Medical offices, hospitals, social workers, attorneys, and even post offices may carry these documents. In fact, hospitals receiving medical and Medicaid payments are required to offer their patients these documents. A good place to begin this process is an open discussion with a primary-care doctor or other treating physicians. As stated earlier, living wills and advance directives can be very broad or quite specific. Meanings, implications, risks, and benefits of components of an advance directive deserve clear understanding before they are signed in a legally binding document that may be relied upon for end-of-life decisions. Selecting a person as a medical power of attorney is also an important decision. The surrogate decision maker does not necessarily need to be a family member or a relative. In truth, any person in whom an individual trusts to carry out their wishes on their behalf and in good faith, can be designated as a health-care proxy. Additionally, because these are legal documents of various forms, appropriate and accurate drafting with the help of an attorney is advised. Furthermore, as regulations may vary from state to state, your attorney can also guide you through how to do a living will and an advance directive. Although it is highly encouraged, it is often difficult to address issues pertaining to terminal illnesses, end-of-life care, and death with loved ones and caregivers. Despite having proper
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documentation, it is important for family members and caregivers to have some general knowledge about a patient's preferences. More importantly, family members or anyone close to the individual must know where these documents are located and be able to provide them or refer to them in cases of emergency. It is also extremely beneficial to have extra copies of these documents and to bring them with the patient to the hospital, emergency room, or even doctors' offices.

1. A 27-year-old male was referred to our clinic with pain at the level of the sternoclavicular joint bilaterally, associated with papular and pustular skin lesions scattered throughout the trunk and face. The dermatosis had about 12 years of evolution, characterised by periods of exacerbation and remission. In teenage, he was diagnosed with acne fulminans on the face and trunk treated with antibiotic (doxycycline) and isotretinoin with a good dermatological evolution. About 1 year after the onset of skin manifestations, he started with infl ammatory pain complaints, in the anterior chest region (sternoclavicular), bilateral characterised as persistent and of moderate intensity. Throughout the duration of the disease he had always been treated with NSAIDs and analgesics in progressively higher doses. On physical examination, he had scattered skin lesions in the dorsal trunk. The joint examination revealed pain on sternoclavicular and costoclavicular joints palpation. There were no other signifi cant alterations.

INVESTIGATIONS
Blood tests showed no elevated infl ammatory parameters,

immunologic tests (antinuclear antibody, antidouble stranded DNA antibody, immunoglobulin levels and complement levels, human leucocyte antigen B27 and serologic tests (human immunodefi ciency virus, venereal disease research laboratory and hepatitis B and C) were negative. The reactive arthritis related bacteria were tested ( Chlamydia trachomatis , Salmonella spp., Shigella spp., Yersinia spp. and Campylobacter spp), with negative results. The chest radiography showed bilaterally severe destruction of the sternoclavicular joint . Bone scintigraphy showed increased uptake on both sternocostoclavicular joints. A thoracic CT scan revealed sternocostoclavicular hyperostosis with subchondral erosions. What is the diagnosis?

2.The patient is a 47-year-old Filipino woman who developed goitre 3 months prior to consult. It was not accompanied with palpitations, tremors, easy fatigability, weight change, heat or cold intolerance, weakness, diarrhoea or constipation and eye changes. The goitre was stable in size, not associated with pain, dysphagia, dyspnoea, or hoarseness of voice. The review of systems was unremarkable. She has no known medical illness. She has regular menstrual cycle and is a gravida 4 para 4. There is no family history of goitre, thyroid cancer, or autoimmune disorder. The patient has no vices. Physical examination showed stable vital signs. She had diffusely enlarged thyroid gland measuring 42 cm (right lobe) and 53 cm (left lobe) with fi rm consistency. There were no eye signs. She had normal cardiac rate and rhythm, normal refl exes and no fi ne fi nger tremors. The rest of the physical examination was unremarkable.

INVESTIGATIONS

Thyroid function test showed elevated thyrotropin level at 95.9 mIU/l (N.V. 0.33.8) with low free thyroxine level at 6.4 pmol/l (N.V. 1124). Thyroid ultrasound revealed

slightly enlarged thyroid gland with the following dimensions: 5.41.91.6 cm (right lobe) and 4.91.91.6 cm (left lobe); with note of diffuse parenchymal disease. Antithyroid peroxidase antibody level was noted to be elevated at 180.9 U/l (N.V. <100). The patient was started on levothyroxine replacement therapy at 1.6 mcg/kg body weight/day and regular followup was done. Levothyroxine dose was adjusted to maintain the thyrotropin level within normal limits. Four years later the patient started to experience malaise, generalised weakness and fatigue. On examination, she was noted to have normal blood pressure with no postural hypotension. The rest of the physical fi ndings were unremarkable. During that time, repeat thyrotropin level was noted to be slightly elevated at 7.0 mIU/l (N.V. 0.3 3.8). The dose of levothyroxine was increased. Complete blood count was within acceptable levels. Fasting blood sugar was also within normal. Other investigations were given below.
Thyroid stimulating hormone 95.9 mIU/l 0.33.8 Free T4 6.4 pmol/l 11.024.0 Fasting blood sugar 3.97 mmol/l 3.96.1 Na 130.7 mmol/l 136145 K 5.2 mmol/l 3.55.1 Ca 2.34 mmol/l 2.122.52 Haemoglobin 122 g/l 120150 Serologic test Antithyroid peroxidase antibody 180.9 U/l <100 What is the diagnosis?