Addressing barriers to providing optimal end-of-life care

Physicians providing care in the community and long term care (LTC) facilities in Alberta, Canada, were interviewed to determine what they perceived as barriers and facilitators to providing optimal end-of-life care.1 Among their concerns, they reported motivational barriers related to families, citing the family’s lack of knowledge about frailty, unrealistic care expectations and expressions of grief as barriers to providing optimal end-0f-life care. Also, providing optimal end-of-life care was difficult if the physician and care team had limited knowledge of the person’s spiritual, emotional, and mental health needs.

Providing optimal care at end-of-life is essential. However, it becomes near-to-impossible when end-of-life care is not discussed until end-of-life.

The need to provide excellent end-of-life care for all people is acknowledged worldwide. The issues arise in knowing how to prepare for optimal end-of-life care.

Fortunately, the recommendations in the Framework on Palliative Care in Canada2 in part, address the barriers mentioned in the research. The recommendations of Harasym et al, (2020) from their research align well with the principles of palliative care and include:

  • Using standardized tools to help address understanding of pain with dementia
  • Assessing routinely to help prevent crisis
  • Engaging spiritual care providers who also had some medical knowledge would help to support family
  • Improving staffing ratios to ensure caregivers were available to provide more intensive end-of-life care

These strategies will help the care team to support the person and family in providing optimal care at end-of-life. However, it becomes very difficult when end-of-life care is not discussed until end-of-life.

Preparing for optimal end-of-life care is what a palliative approach is about

Integrating a palliative approach to care early in the person’s illness, possibly when they are still living in the community, enables appropriate information sharing with the person and family about the illness and helps them to understand what to expect. With a palliative approach, information sharing and serious illness conversations can be approached gently over time, instead of in urgent situations when the person is at end-of-life.

Integrating a palliative approach also means that palliative care is not the sole responsibility of the specialist, in this case, the physician. The entire care team—PSWs, nurses, socials workers, care directors, and so on, are involved in supporting the person and family through the person’s illness and death. Together with the family and community, the team gathers information about the person, their beliefs, values and goals of care. With this knowledge the care team is better able to meet the person’s physical, spiritual, emotional and mental health needs at end-of-life. And with a palliative approach, care planning conversations that occur long before end-of-life in both formal and informal ways, can help decrease fears and help prepare the person and family for future changes.

Educating all care providers

One thing that 2020 has made apparent is that health care is woefully unprepared to support greater numbers of people living and dying with life-limiting illness. The predicted number of Canadians with dementia who will need care in the year 2030 is astounding – an increase of 66% to an estimate of 937,000 people.

It is possible to prevent or address the barriers mentioned by Harasym et al (2020) and provide optimal end-of-life care—by educating all members of the care team, including physicians, in providing basic palliative care and integrating a palliative approach. To meet the care needs of people in the coming years, all members of the care team will need to be able to integrate a palliative approach now. Today. Tomorrow and next month and next year.

This means educating all caregivers to be confident and competent in preparing to care, opening doors to serious illness conversations, managing physical comfort, ways of responding to serious illness questions from the person and family, and palliative care best practices in communication. With this training, the health care team will be able to provide optimal end-of-life care for people dying in the coming years.

1 Harasym P, Brisbin S, Afzaal M, et al. Barriers and facilitators to optimal supportive end-of-life palliative care in long-term care facilities: a qualitative descriptive study of community-based and specialist palliative care physicians’ experiences, perceptions and perspectives. BMJ Open 2020;10:e037466. doi:10.1136/bmjopen-2020-037466

2 Health Canada, Framework on Palliative Care (2018)

COVID-19 resource: Recognizing difficult breathing and strategies for supporting comfort

image of difficult breathing page 1One of the challenges health care providers are facing with COVID-19 is managing breathlessness or shortness of breath in infected patients.

For some caregivers and health care professionals, it may not be logical to consider applying palliative care principles and practices for managing difficult breathing when supporting people with breathlessness due to COVID-19. Know that applying palliative care principles and practices does not indicate that the person with COVID-19 is dying imminently. Repeat: Applying palliative care principles does not mean that a person is dying imminently. It does, however, mean that you may help the person to feel more comfortable while they are ill.

We’re offering an excerpt from the textbook, Integrating a Palliative Approach: Essentials for Personal Support Workers, titled “Common Symptoms – Difficult Breathing” to assist you when supporting a person with a COVID-19 infection.  This section describes key signs indicating a person is experiencing breathlessness and discusses comfort measures for supporting a person experiencing difficult breathing. We hope that it helps you as you support people ill with COVID-19.


Enter your information below to receive instant access to the text excerpt, “Common Symptoms – Difficult Breathing.”

CAUTION * For some people with COVID-19, difficulty with breathing progresses very quickly and becomes severe. When you recognize that a person is experiencing any difficulty with breathing, regardless of severity, connect first with your local health care professionals for guidance, assessment and treatment options.

This resource should not be considered a replacement, substitute or alternative to seeking appropriate and timely medical care.

Get access to our resource, Common Symptoms: Difficult Breathing

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Cuidar con compasión: es difícil ser familia

Cuidar con compasión: es difícil ser familia

Escrito por Kath Murray

 Se ha escuchado decir a las personas involucradas en el cuidado de las personas en vías de morir:

Cuidar a la persona moribunda es fácil; lo difícil es cuidar de la familia.

El punto a recordar es que las personas responden a la muerte de un miembro de la familia de diferentes mane-ras, lo cual es normal. También es cierto que las maneras en que las personas responden cuando un ser querido está muriendo están fuertemente relacionadas con su historia como familia, incluida la naturaleza de sus relaciones con los demás, la distancia física y emocional que los separa, así como su relación con ellos y las obligaciones existentes para trabajar y así sucesivamente.

Recuerden que los miembros de la familia necesitan de su comprensión, compasión y calidez.

No necesitan que ustedes tomen partido, juzguen o compartan sus opiniones personales. Sean amables. Empaticen. Apoyen. Reconozcan. Informen. Animen.

Puede ser útil recordar lo siguiente:

  • La persona en proceso de morir y la familia son la uni­dad de atención. Mientras trabajan para crear un lugar seguro para que la persona muera, traten también de crear uno para la familia.
  • El estrés y el dolor pueden ser compañeros constantes de una familia. Acepten la amplia gama de respuestas emocionales que varios miembros de la familia experi­mentan y expresan.
  • Respondan a las preguntas e inquietudes, incluso si es simplemente con: “Esa es una buena pregunta. Hablemos de eso”.
  • Proporcionen información precisa de manera oportuna para permitir que los miembros de la familia anticipen cambios, validen lo que ven y participen en el cuidado. La información también puede reducir los temores y prevenir crisis innecesarias.
  • Brinden mensajes que sean consistentes con los del equipo de atención médica. Es difícil tanto para la per­sona como para la familia recibir diferentes mensajes que se contradicen por parte de por diversos miembros del equipo. Si una familia tiene problemas con mensajes contradictorios, hablen con el equipo.

Providing Compassion—It’s Hard to be Family

Written by Kath Murray

People who are involved in palliative care often say,

“Caring for the dying person is easy. It is caring for the family that is difficult.”

Of course, it is easier or simpler to care for an unresponsive person than to care for a group of people who have come together to be with, care for, and make decisions for a family member who is dying.

Just imagine all that is happening for this group of people! Imagine each person and what that person might be experiencing. Imagine what the whole person experience of grief might be like for each person involved—the emotions, the struggle to think, the stress and pains in their body, the spiritual angst, the difficulty relating to other people. All these things are normal.

Now think of these people who have come together as a group, perhaps as a family, with who knows what history of relationships, styles, personalities, struggles, wounds, communication blocks—imagine that they are together, perhaps for the first time in years, perhaps because they are drawn to close what have been difficult relationships, perhaps dancing a dance that they have danced for decades. Imagine that they are having to walk side by side with someone whose style does not mesh with theirs and whose presence irritates or reminds them of hard days gone by. Just imagine!

You say that caring for the dying person is easier. Of course it is!Family gathers around a loved one who is dying

Let me share a few secrets with you.

Caring for, or companioning, a loved one through to death can be a sacred and special experience, but it can also be a difficult and challenging one.

Some family caregivers choose to take on that role, and others may feel that they had no choice and feel resentment for having to do so. Some people respond to the dying of a loved one by wanting to help, while others may find it too uncomfortable or frightening to be involved at all.

It is normal for old, unresolved issues and feelings to bubble up to the surface when someone is dying, making family dynamics complex and sometimes even hard to watch. At other times, family members may actually be brought closer to one another by an impending death and the need to work together to make decisions and carry out a loved one’s wishes.

The point is that people respond to a family member dying in all kinds of different ways, and this is normal and to be expected. It is also true that the ways in which people respond when a loved one is dying are strongly related to their history as a family, including the nature of their relationships with each other, and the physical and emotional distance that separates them, as well as their existing obligations to work and so on.

Family members need your understanding, your compassion, and your warmth.

They do not need you to take sides, judge, or share your personal opinions.

Be kind.

They need you to empathize, support, acknowledge, inform, and encourage. I repeat: Be kind!

You would do well to remember the following:

– The dying person and the family are the unit of care. While you work to create a safe place for the person to die, try to create a safe place for the family too.

– Stress and grief may be a family’s constant companions. Understand and accept the wide range of emotional responses that various family members experience.

– Respond to questions and concerns, even if it is simply to reply, “That is a good question. Can I connect you with the nurse who can discuss that in further detail?”

– Accurate information given in a timely way allows family members to anticipate changes, validate what they see, and participate in caregiving. It can also reduce fears and prevent unnecessary crises.

– Receiving conflicting messages from various members of the team is difficult for the person and the family. If a family is struggling with conflicting messages, talk with the nurse. When you share information with the family, make sure it is accurate and consistent with information the team provides and with the care plan.

And lastly, remember to take care of you, so that you can provide care for the dying person and family.

Warm regards


An excerpt from Integrating a Palliative Approach: Essentials for Personal Support Workers

For more information like this, explore the resources for nurses and front line caregivers