When people are faced with terminal illnesses and death, they usually need suppo
ID: 124329 • Letter: W
Question
When people are faced with terminal illnesses and death, they usually need support and guidance to identify how they want to live the end of their life. The RN can play a vital role in this process. Ellen Goodman started what is called “The Conversation project” in 2012 to champion this need. Initial Discussion Post: Identify and state when end of life conversations should occur and why at that time(s). Identify and describe how as a RN you can promote and support this end of life decision process. Identify and state how the RN’s personal beliefs and feelings can impact having these end of life conversations with patients and families.
Explanation / Answer
In 2012, in her encore career as a “recovering journalist” Ellen Goodman founded Cambridge, Mass. based nonprofit organization The Conversation Project, a public health campaign that aims to change the way people talk about, and prepare for, death – across the nation and beyond.
The Conversation Project raises public awareness about the importance of expressing one’s and respecting others’ wishes for end of life care. She believes too many people die in a manner they would not choose and too many of their loved ones are left feeling bereaved, guilty and uncertain about the choices made on their behalf. And she knows we can make this easier.
Roles and responsibilities of an RN:
Staff have many responsibilities in end of life care which will range from having a sensitive conversation with an individual about their care and preferences, recognising any changes in condition and offering compassion and support to the patient and those important to them. This will require a broad variety of skills and an awareness of the values which underpin this behaviour. Compassionate care has to be at the forefront of all nursing care but is even more fundamental in the provision of caring for dying people and those close to them.
When providing end of life care, ensure that;
• treat people compassionately
• listen to people
• communicate clearly and sensitively
• identify and meet the communication needs of each individual
• acknowledge pain and distress and take action
• recognise when someone may be entering the last few days and hours of life
• involve people in decisions about their care and respect their wishes
• keep the person who is reaching the end of their life and those important to them up to date with any changes in condition
• document a summary of conversations and decisions
• seek further advice if needed
• look after yourself and your colleagues and seek support if you need it
Although challenging and emotionally demanding, when you are supported to have the right skills, knowledge and attitude, end of life care can be very rewarding.
End of life care is provided in a range of settings which include care in the community, a hospital, care home, hospice etc. Regardless of care setting, the quality of care should be of the highest standard.
When it is recognised by nurses and doctors that a person may be dying, this needs to be communicated in a sensitive and compassionate way to the dying person (as appropriate) and those close to them.
How we communicate with the person who is dying will depend on each individual case. This is an extremely sensitive area and should be patient led, with gentle, honest answers using language the person understands. At no time should the conversation continue, if there is any indication that the patient doesn’t want to continue. Staff should always be mindful that some patients will not want this conversation and therefore it should not take place. However, it is crucial that conversations should take place with families to prepare them for impending death.
Care of the person
When you provide good nursing care for those at the end of their life, you will be providing holistic care including providing physical, emotional, psychological and spiritual support. The individual may be a patient, but remember they are also another human being that may be feeling lost, confused and have questions about their nutritional and hydration needs. Equally, the person may not come to you with questions, preferring to keep them to him or herself, or discuss with another person of their choosing. It’s important to let the person remain in control of who they wish to share these issues with. Don’t forget that those close to the individual may also be looking for support and information.
It is important to be sensitive to people’s needs in relation to nutrition and hydration. If someone has a question, try your best to answer it if you are able, or make sure you seek advice from a more senior member of staff if you aren’t sure.
Understanding the dying process
Caring for a person during the last few weeks and days of life can be stressful and demanding. Many different feelings and emotions may surface from all those involved. When it is recognised by nurses and doctors that a person may be dying, you then need to communicate this in a sensitive and compassionate way to the person and those close to them. It is also important to communicate why it is only necessary to provide minimal hydration.
A key part of the nurse’s role is being able to come alongside the person who is dying and those close to them and to support them throughout what is a natural process.
The time before death is generally peaceful for patients, and there is a gentle winding down that may take several days. Many people are concerned that death will be a painful experience for the person, but the body just starts to ‘let go’ of life. At times a person can become restless, but this can be treated.
There are physical signs of the natural process of the person’s body gradually slowing down. Sometimes these signs appear a few hours before death, and sometimes it can be a few days. We look further into the signs of dying in another section of this module.
Learning from complaints
Staff often feel defensive when a complaint is received, however this is not helpful behaviour and an apology should not be viewed as an admission that they have got it wrong. Saying sorry is one of the most helpful things you can do, when a complaint is received. There is a helpful document called ‘Saying Sorry’ around how to say sorry.
Spiritual Support and Communication
Many patients need spiritual support at the end of life, and a hospice nurse may coordinate with chaplains, ministers, priests or other spiritual advisers to meet the needs of the patient or family. Nurses in hospice are often the communication bridge between patient, family, physicians and other members of the hospice care team. Hospice nurses must understand the end-stage processes of many diseases as well as provide culturally sensitive care and emotional support.
Crisis Care
Patients in hospice may experience crisis situations such as pain that is out of control, difficulty breathing, agitation, confusion or bleeding. The role of the nurse in these situations is to provide supportive care and alleviate symptoms through strategies such as providing medications rather than heroic measures aimed at extending life. Whenever possible, the hospice nurse should manage the patient’s symptoms at home rather than advise transfer to an inpatient hospice or hospital.
Risks and ethical dilemmas
End-of-life care often involves choices that are ethically difficult and give rise to fears of potential liability. Withdrawal of life-sustaining treatment such as dialysis or a feeding tube and the need for large or escalating doses of opioids (which can lead to serious adverse effects or even be lethal) or sedatives are particularly troubling issues.
Here's what the ANA says about opioids: “Nurses must use effective doses of medications prescribed for symptom control and nurses have a moral obligation to advocate on behalf of the patient when prescribed medication is insufficiently managing pain and other distressing symptoms. The increasing titration of medication to achieve adequate symptom control is ethically justified.”
The Hospice and Palliative Nursing Association takes a similar position regarding the use of potentially lethal sedatives—a practice sometimes called terminal sedation: “For imminently dying patients… whose suffering is unrelenting and unendurable,” its position statement says, “… medications intended to induce varying degrees of unconsciousness but not death…may offer relief.”
Actions based on these principles are not the same as euthanasia or assisted suicide, which are not sanctioned by nursing codes of conduct and are illegal in almost every state.
Withholding and withdrawing life-sustaining therapy is also legally and ethically permissible if it is the patient's fully informed and freely made wish—or if the therapy is causing or will cause harm to the patient or offers no benefit to the patient. Artificial nutrition and hydration may be withheld or withdrawn on the same grounds. To avoid liability, however, it is essential to follow your institution's guidelines n these issues, as well as your state's law.
Your role, regardless of the circumstances, is to advocate for the patient's wishes, as expressed in an advanced directive or an advance planning conversation or by the patient's chosen surrogate. The family may want to consult with a psychiatrist, ethicist, chaplain, social worker, pharmacist or palliative care specialist in making an end-of-life care decision. Judy Lentz, RN, CEO of the Hospice and Palliative Nurses Association, noted, “Decisions based on the known desires of the patient and family, as the unit of care, are the guiding directives for the patient plan of care.”
If you find yourself in a position where a patient's desire to end life-sustaining interventions conflicts with your own belief system, request that his or her care be transferred to a colleague. As always, thoroughly document any conversations you have with the patient, family or other professionals about end-of-life decisions to protect yourself against potential liability.
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