End of Life Care Flashcards
What are the principles of end of life care for patients with capacity?
A patient with capacity who is deemed to be end of life by a Doctor has a direct say in their EoL care.
The Dr will advise which actions are appropriate (including not taking any action). The Dr explains the options to the pt, laying out the risks & benefits. The Dr may recommend an option they believe to be in the best interest of the patient, but they must not put pressure on the patient to accept their advice.
The patient with capacity weighs up the risks and benefits and decides. They have a right to accept or refuse an option for a reason that may seem irrational to the doctor or for no reason at all.
if the patient asks for treatment that the Dr doesn’t think would be appropriate, the Dr should explore their reasons for requesting it, their understanding of what it involves, and their expectations about the likely outcome. This will help the Dr take account of factors significant to the patient and assess whether providing the treatment could serve the patient’s needs. If after this discussion the Dr still considers the treatment would not serve the patient’s needs, then they should not provide it. But, the Dr must explain their reasons to the patient and explore other options that might be available, including their right to seek a 2nd opinion.
What are the principles of end of life care for patients without capacity?
Check who has the responsibility to decide which option would be of overall benefit and make sure reasonable steps are taken to find out i.e. whether there’s evidence of the patient’s previously expressed values and preferences that may be legally binding, such as an advance refusal of treatment, whether someone else has legal authority to make the decision or has been appointed to represent them. Bear in mind that the powers held by a legal proxy may not cover all types of treatment so you should check the scope of their decision-making authority.
If there’s no evidence of a legally binding advance refusal of treatment and no one has legal authority to make this decision for the patient, then, if you have lead responsibility for the patient’s treatment and care, you are responsible for deciding what would be overall benefit for them. In doing so, you must consult with those close to the patient and other members of the MDT, take account of their views about what the patient would want, consider which option aligns most closely with the patient’s needs, preferences, values and priorities, and consider which option would be the least restrictive.
if the patient has made an advance refusal of treatment, the doctor must make a judgement about its validity and its applicability to the current circumstances. If its found to be legally binding, it must be followed in relation to that treatment. Otherwise it should be taken into account as information about the patient’s previous wishes.
If an attorney or other legal proxy has been appointed to make healthcare decisions for the patient, the doctor explains the relevant options to the legal proxy, setting out the benefits, burdens and risks for each option. The doctor may recommend a particular option which they believe would provide overall benefit for the patient. The legal proxy weighs up these considerations and any non-clinical issues that are relevant to the patient’s treatment and care, and, considering which option would be least restrictive of the patient’s future choices, makes the decision about which option will be of overall benefit. The doctor should offer support to the legal proxy in making the decision, but must not pressurise them to accept a particular recommendation.
if there is no legal proxy, close relative or other person willing/able to support the patient and the decision involves serious medical treatment, the doctor must approach their employing or contracting organisation about appointing an independent mental capacity advocate (IMCA), as required by the mental capacity act 2005. The IMCA will have authority to make enquiries about the patient and contribute to the decision by representing the patient’s interests, but cannot make a decision on behalf of the patient.
Can you share information about a patient who is end of life with their family?
Those close to a patient may want or need information about the patient’s diagnosis and about the likely progression of the condition or disease, in order to help them provide care and recognise and respond to changes in the patient’s condition. If a patient has capacity to make decisions, you should check that they agree to you sharing this information. If a patient lacks capacity to make a decision about sharing information, it is reasonable to assume that, unless they indicate otherwise, they would want those closest to them to be kept informed of relevant information about their general condition and prognosis.
What makes an advance refusal of treatment valid?
Validity means that the patient was an adult when the decision was made, the patient had capacity to make the decision at the time it was made and not subject to undue influence, the patient made the decision on the basis of adequate information about the implications of their choice.
What makes an advance refusal of treatment valid?
Validity means that the patient was an adult when the decision was made, the patient had capacity to make the decision at the time it was made and not subject to undue influence, the patient made the decision on the basis of adequate information about the implications of their choice.
What makes an advance refusal of treatment applicable?
Advance refusals are applicable if they clearly apply to the patient’s current situation and treatment, whether the decision specifies particular circumstances in which the refusal of treatment should not apply, how long ago the decision was made and whether it’s been updated, whether there are reasonable grounds to believe that circumstances exist which the patient did not anticipate and would have otherwise affected their decision.
What are the principles around clinically assisted nutrition and hydration?
- Ensure that patients, those close to them and the healthcare team understand that, when clinically assisted nutrition or hydration would be of overall benefit, it will always be offered; and that if a decision is taken not to provide clinically assisted nutrition or hydration, the patient will continue to receive high-quality care, with any symptoms addressed.
- When the benefits, risks, and burdens are finely balanced, the patient’s request will usually be the deciding factor.
- If after discussion you still consider that the treatment would not be clinically appropriate, you do not have to provide it, but you should explain your reasons to the patient and explain other available options, including the option to seek a second opinion.
- If a patient is in the end stage of a disease, but you judge that their death is not expected within hours or days, you must provide clinically assisted nutrition or hydration if it would be of overall benefit to them, taking into account the patient’s beliefs and values, any previous request for nutrition or hydration by tube and other views they previously expressed about their care. If you decide it is not appropriate, you must also seek a second opinion from a senior clinician who has experience with the patient’s condition (not necessarily the patient themselves).
- You must monitor the patient’s condition and be prepared to reassess the benefits, burdens and risks of providing clinically assisted nutrition or hydration in light of changes in their condition.
- For incapacitated adults expected to die in hrs-days, if you consider that the burdens or risks of providing clinically assisted nutrition or hydration outweigh the benefits they are likely to bring, it will not usually be appropriate to start or continue treatment. However, If a patient has previously requested that nutrition or hydration be provided until their death, or those close to the patient are sure that this is what the patient wanted, the patient’s wishes must be given weight and, when the benefits, burdens and risks are finely balanced, will usually be the deciding factor. You must keep the patient’s condition under review, especially if they life longer than expected.
