Caring for a person at the end of their life can be a gift. If done well, we can support a person to die with dignity as well as supporting the loved ones they will leave behind. This presents two questions:
- What is the role of speech pathology in end of life care, and
- What does it mean, to “do it well”?
How about we start by addressing the first question: What is the role of speech pathology in end of life care?
Palliative care doesn’t mean that death is imminent. The World Health Organisation (WHO) provides a definition of palliative care. This definition makes it clear that end of life care is all about collaboration, support, quality of life, and placing the individual and their loved ones front and centre. I believe speech pathologists do just that, every day, in almost all of the services we provide.
What is palliative care?
According to the WHO, palliative care:
- provides relief from pain and other distressing symptoms;
- affirms life and regards dying as a normal process;
- intends neither to hasten or postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patients illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness;
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
In end of life care, there is stronger acknowledgement of a person’s right to decline a service, if it might unnecessarily prolong life. That’s what makes end of life care different to the rest of a speech pathologist’s daily work. It is the ethical tug of war between principles of patient autonomy (“freedom of choice”) and a speech pathologist’s goal of beneficence (“to do good”).
Communication services at end of life
Communication skills might be impacted at the end of life because of the primary condition (such as Motor Neurone Disease) or as a side-effect of the palliative process (e.g. due to fatigue, pain, or medication). Obviously speech pathologists are well-placed to support a person’s communication skills. Chahda et al (2017) suggest that communication services at end of life might have the following goals:
- To maintain social and emotional closeness between the person in palliative care and their family/caregivers.
- To optimise the person’s ability to express their needs, concerns and preferences related to daily care and end of life decisions.
- To preserve the person’s ability to express their emotional states or any concerns about death and dying, including achieving a sense of spiritual and emotional closure prior to death.
In a practical sense, a speech pathologist might start by completing a communication assessment. Information from this assessment can be shared with the person, their family/caregivers, and the healthcare team. This might lead to communication partner training. Specific strategies can be identified, that will enable improved communication participation. The speech pathologist might develop Alternative and Augmentative Communication (AAC) systems such as communication books or speech generating devices. These AAC systems can be used alongside verbal communication, or they might replace verbal communication. They are designed to suit each individual.
Swallowing services at end of life
Eating and drinking skills can also be compromised at the end of life. Speech pathologists have specialist skills in assessing and managing swallowing difficulties. In a “standard” swallowing service, a speech pathologist’s goal might be to minimise risk of aspiration or choking, using positioning, equipment, texture modification, and/or swallowing rehabilitation. The swallowing service helps the person to enjoy eating and drinking (because coughing and choking throughout a meal is pretty uncomfortable). The swallowing service can also optimise nutrition and hydration. The person can then think more clearly and have more energy to connect with the world around them. In an “end of life” swallowing service, a speech pathologist’s goals might change. Our swallowing recommendations might be unpalatable, uncomfortable, or simply unwanted. Before the speech pathologist gets involved, we need collaboration within the health care team, and we must give good information to the individual about the potential outcomes of a swallowing assessment. If this is all in place and the swallowing assessment goes ahead, then the speech pathologist might start by assessing a person’s ability to eat food and drink fluids. The information from this assessment helps us determine what is safe, what is comfortable, and what might help the person to meet their personal mealtime goals.