5 Steps : Medical Care Decision Making For Families And Guardians. July 2013

5 Steps: Medical Care Decision Making for Families and Guardians www.youracp.com

Dr Jerome Mellor, GP, July 2013

The process by which families and guardians make decisions for those not capable of making decisions for themselves can be described in 5 Steps and can be used by doctors, nurses and families themselves in Hospitals and Nursing Homes. Step 1: WHAT ARE THE RIGHTS OF FAMILIES AND GUARDIANS? Families of elderly relatives in nursing homes and hospitals are often called on to make decisions about medical treatment on their behalf if they suffer from confusion, dementia, severe strokes or vegetative states. This is sometimes known as “Substitute, Surrogate or Proxy Decision Making”. This article discusses how families can improve and make sense of this process. An integral part of doctors’ duty of care should be to provide information and choices in medical decision-making rather than treating without reference to the wishes of the residents’ family. The Laws of Consent and professional ethics support the rights of the family member or “person responsible” to consent or refuse treatment. If you don’t wish to needlessly prolong the suffering of your relative you will need to consider whether you would want to treat or prevent any of the conditions from which patients commonly die, such as heart attacks, strokes, pneumonia, influenza, cancer and sometimes when they can no longer swallow solids or fluids. Step 2: WHAT IS LIFE-PROLONGING TREATMENT? One needs to consider the benefits and possible outcomes of any active treatment proposed. Then consider whether, at this point in time, the option of palliative care is preferable. Many life-prolonging treatments are common in Nursing Homes & Hostels. Palliative care usually implies comfort measures through good nursing care, strong painkillers and sedation. Life-prolonging treatments include • Hospital admission for more intensive treatment, CPR and Life support • Operations for cancer and other illnesses • Antibiotics for serious infections • Medications such as blood pressure tablets, blood thinners & cholesterol medications (to prevent strokes and heart attacks). • Immunisations to prevent flu’ and pneumonia. • Nutritional supplements for weight loss in end stage dementia (for example Sustagen and Resource drinks). Many people feel that by refusing treatment or prevention, you are letting nature take its’ course. Not everybody shares this view and this issue can cause some conflict in families, Step 3: WHAT ARE THE POSSIBLE OUTCOMES AFTER TREATMENT? Many patients are admitted to hospital can be acutely confused or even unconscious with illnesses like strokes, heart attacks or pneumonia. These illnesses may be temporary and reversible and doctors discuss the outlook in terms of full recovery, partial recovery or substantial disability. Sometimes treatment may be deemed to be futile and the patient may die regardless of treatment. The situation is quite different for patients with moderate or severe dementia. As the outcome of using life-prolonging treatment is to return them to the inevitable progress of their underlying dementia illness. It then becomes important to understand the three things that characterize the normal course of dementia or Alzheimer’s disease: • These patients often live for several years after being admitted to a nursing home. • It is a progressive illness with marked mental deterioration, physical weakness and falls culminating in a vegetative-like state (that is, they become bedridden, incontinent, have to be spoon-fed and can no longer communicate effectively). • It is frequently complicated by other illnesses and behaviour problems A diagrammatic timeline of a patient with Dementia or Alzheimer’s: 1st Year:

2nd Year

-Admitted from home

-Increasing falls and confusion

-Confused but still mobile

3rd Year transferred to Nursing Wing: -Fractured Hip -Behaviour problems

4th Year:

5th & 6th Years:

-Bedridden

Vegetative State

-Doubly Incontinent

-Spoon-fed

-Urine & chest infections

-Unable to communicate

So when we are trying to make decisions about life prolonging treatment, we need to take into account what the final outcome might be. Whether, for example, they might be so disabled to have to be admitted to a Nursing Home or at what point in the timeline of a patient with dementia patient is appropriate to let nature take its course. The debate for some is about quality versus quantity and for others life itself is all-important.

Step 4: WHAT WOULD THE PATIENT HAVE WANTED IN THIS SITUATION? If a patient has a written Advance Care Directive, you should follow its’ directions. They may have discussed these issues with the family before they fell too ill to decide for themselves. This may have been a general direction such as “if I’m ever like that I don’t want any treatment to prolong my life”. Discuss the spirit of any principles they have discussed with their Doctor or Nurses and try and include them in your decision. Consider any previously expressed views on their attitudes to being admitted to a nursing home or being dependant on 24 hour nursing care. Many elderly may have specific religious or spiritual beliefs or have strong views on euthanasia. In most countries euthanasia is illegal, but the context of the conversations about this may give the families a clue to wishes for future lifeprolonging treatment. They may also have had valuable previous experience of making decisions for sick relatives or friends who have lost the capacity to decide and fallen ill with strokes, dementia or illnesses requiring life support. Have they expressed a preference to die at home? All these issues may give important clues regarding the possible wishes of someone’s attitude to life prolonging treatments if they themselves had an irreversible condition, which had left them severely mentally incapacitated. Ask yourselves a few questions: Would their level of physical and mental functioning be acceptable to them? Would they feel that they retained their enough of their personality and spirit and would continue to value life in its present form? • Despite their loss of personal dignity and independence would they feel that life would still be worth living? • Would they have any religious or spiritual convictions that would impact on this decision? • Would they believe that their best interests be served by treatment to prolong their lives rather than letting nature take its course? In ethical terms, this step is one of assessing a patients' values, beliefs & life goals and uses substituted contemporaneous decision making to come to a conclusion of whether to consent or refuse life-prolonging treatment. In other words, a way of looking how an individual would have decided if they were there to able see what was happening to them now. • •

Step 5: USING WRITTEN PALLIATIVE CARE DIRECTIVES When confronted with any illness in your family member, discuss these issues with close family, nurses and doctors. The longterm suffering of some of these patients may be seen to be worse than the short term suffering of stopping life-prolonging treatment. If you come to the decision that you want them to have palliative care rather than active treatment, it’s important to complete a Palliative Care Directive form*. This form deals with: • • • •

Consent for hospital admission for palliative care only Consent for antibiotics for minor illnesses Refusal of consent for life prolonging treatments like CPR, Blood pressure medication, Nutritional Supplements etc. Cessation of pointless routine screening such as blood pressure monitoring and regular weighing

The treating doctor or nurse you discussed this with may not always be available so by having a written directive in their medical notes ensures everyone is aware of the families views. It also gives the treating professional some security and certainty that by ceasing life-prolonging treatment and providing palliative care only, their actions can easily be defended medico-legally. There are several other points to consider: • Remember that by stopping treatments such as aspirin or cholesterol tablets you may actually make no immediate or long-term difference to how long a patient lives. • If a patient is on blood thinners, cholesterol tablets, blood pressure tablets, has annual Influenza immunisations and is on nutritional supplements, then they are likely to live far longer than if these treatments were ceased. • You must understand that there may be risks in refusing treatment; if you stopped some treatments your relative may have a stroke and not die, but just be more disabled. However at that point in their lives that may not be an important issue. Conclusion: Families and guardians should feel that they have made the decision rather than your doctor or nurse. You may feel angry and robbed if you had told them to do “whatever you think is best” and your relative dies because treatment was withdrawn or not given, if this was not your intention. Remember predictions that they will “die a horrible death” unless they have some radical treatment or surgery may deny you a considered decision. With modern palliative care this outcome is unlikely and should be good reason for you to take time to reflect and to seek the opinions of other medical professionals and family. In the case of Nursing Home patients, it is in everyone’s best interests that family members see the treating family doctor at least once a year or whenever their health circumstances change substantially (hospital admissions, fractures, pneumonia, stroke etc). You can make an appointment to see the treating doctor to review with them the priorities for their ongoing treatment. If you see them in their rooms, take a copy of their medication chart from the nursing home with you for discussion of the issues above. *The Palliative Care Directive and Advance Care or Health Directive forms can be found and printed from the websites: www.youracp.com & ncml.org.au This form is freely available to anyone for reproduction and copying.