The World Health Organization now defines Palliative Care as an approach that improves the quality of life of patients and their families facing serious illnesses by the early treatment of pain and other problems.
Principle of Palliation:
- Focus on the person’s goals.
- Inform and educate the person and family.
- Prevent symptoms that can be prevented.
- Individualize comfort measures.
- Use medications when necessary.
- Observe, record and report initially then follow up.
Use of Medications: QUALITY OF CARE
- Provide regularly, around the clock
- Provide breakthrough doses if needed
- Use the simplest route possible
- Give combination of meds if more effective
- Treat side effects
- Provide non medication comfort measures
- Observe, record and report response to medication and comfort measures
For the most part, a good death is:
- Free from avoidable distress and suffering for the individual, family and caregivers
- In general accord with the individual’s and the family’s wishes
- Reasonably consistent with clinical, cultural and ethical standards (RNAO, 2011).
- A good death occurs when 4 dimensions are met.
- The physical dimension is met when there is adequate pain control, breathing is comfortable, fatigue is manageable, and the individual is free of pressure injuries.
- The spiritual dimension is met when there is acceptance that the end of life is nearing, the patient has had a chance to review his/her life and is at peace.
- The social dimension is met when the patient has been able to communicate his/her needs, wishes, thoughts; there is some sense of closure, and the patient has had the opportunity to say farewell.
- And finally, the emotional dimension is met when the patient is willing to accept help and does not feel like they are a burden on anyone including the health care providers.
There is much misunderstanding when people are talking about palliative care and hospice care. So, let’s take a few minutes to make the distinction between both terms so we are very clear.
In the literature, hospice and palliative care are often used interchangeably which leads to misunderstanding that both mean the same thing. They are not the same thing. Although both hospice and palliative care provide specialized care services that are aimed to improve the overall quality of life for patients with serious illnesses, they are usually implemented in very different circumstances.
Palliative Care
Palliative care is ideally instituted alongside curative care when a person is diagnosed with a serious illness. The one example that comes to my mind is when someone is admitted to the Intensive Care Unit after a severe car accident or after major surgery whereby, they are now on life support and require palliative measures to keep them comfortable while they are recuperating.
Hospice Care
Hospice care on the other hand is reserved for persons for whom the curative medical treatments are no longer an option. This means there are no other curative measures/interventions that can be offered. The patient is dying.
Palliative care extends across the trajectory of life-limiting illness, including care at the point of diagnosis, during treatment and at the end of life, as well as grief and bereavement support
- An approach to patient/family/caregiver-centered health care.
- Focuses on optimal management of distressing symptoms. Incorporates psychosocial and spiritual care according to patient/family/caregiver needs, values, beliefs, and cultures.
- Can begin at diagnosis.
- Becomes the main focus of care when disease-directed, life-prolonging therapies are no longer effective, appropriate or desired
GOAL OF PALLIATIVE CARE:
The goal of palliative care is to anticipate, prevent, and reduce suffering; promote adaptive coping, and support the best possible quality of life for patients’/families’/ caregivers, regardless of the stage of the disease or the need for other therapies.
A panel of experts who worked collaboratively with RNAO recommend a number of nurse-led interventions for a palliative approach to the delivery of care in the last 12 months of life. These include the following:
Nurses assess the cultural needs and values of persons and families
- Nurses perform ongoing assessments of persons and families for:
- Values, beliefs, expectations and preferences about progressive life-limiting illness and death
- Preferred place of death
- As part of a holistic assessment, nurses assess the spiritual, emotional, and existential needs of persons and families including:
- Concerns about EOL
- Presence of spiritual, emotional, and existential distress
- Nurses address the person’s and family’s palliative care and EOL care expectations
- Nurses provide opportunities for life reflection to persons and families
- Nurses facilitate access to resources, space and services needed by persons and families for cultural, spiritual and/or religious practices.
Availability of Palliative Care:
Palliative care can be provided in a variety of settings, such as:
- at home
- hospitals
- long-term care facilities
- hospices (a home for people living with serious illness)
Many people prefer to receive care at home as it can be more comfortable for them with the right supports.
The majority of people living with serious illness can have high quality palliative care provided directly by:
- primary health care providers, such as:
- family doctors
- nurses and nurse practitioners
- volunteers
- caregivers
- social workers
- personal support workers
- members of the community
Primary health care providers can help provide palliative care for people with serious illness that:
- helps improve their quality of life
- aligns with their values and wishes
It will be important for you to share the following information with the patient and their families.
- It will not be easy for them as they will be dealing with their own emotions, fears, and anxiety and they may have to make some difficult decisions.
- It’s important to stress the importance of self-care and respite. Encourage them to take a time out, to perhaps seek respite care in a long-term care facility for a couple of weeks or hospice for a couple of weeks just to give them a break.
- Stress the importance of sharing the caregiver role. Perhaps there is someone from the PC team who can come into the home and help them: a PSW; a recreational therapist; a spiritual advisor; a social worker? Who else can share the caregiver role?
- The patient and family will want to know what to expect as dying approaches. It’s a very scary time in their life, so, make sure you tell them what some of the signs are that death is imminent, and how ae you going to address those signs. What is it that the PC team will do when for example the patient is starting to lose consciousness, is not eating or drinking anymore?
- Tell the family how to manage death should it occur at home. As a team, you need to ensure all the paperwork is ready, is in place. The family needs to know who they’re going to call if they are alone with the patient. What needs to happen? Who is going to pronounce the body? Who do they call? Are they calling 911 or are they calling the funeral home? So, make sure they know what to do so that they are not in panic mode when it does happen.
- Tell them how to seek help; when to seek help; who do they call. Leave a list of who they need to call, for what reason. Is there anybody on call at 3 a.m. when the patient is having excruciating pain?
- Guide them in discussing death and dying with the individual. It’s never and easy conversation and it’s certainly something that we do not do every day. So, help the family to come to terms and be able to talk openly with their loved ones. Are there any last things that you want to tell your loved one? And vice versa. For the patient who is dying, is there anything that he/she wants their family to hear from him/her before they die.
- How do they say goodbye to one another? There are different ways. It could be a video, it could be a letter, it could be spending some really good time together.
- What are some of the positive aspects of caring? So far, a lot of things I’ve said seem a bit negative and tiring, so, it will be important for you as a nurse to really focus on the positivity of caring for someone who is dying in your home. What are some of the good memories that you could build from there? What are some of the feelings that you could overcome? What is the closure like?
- You will be asked to leave a lot of written information and some resources behind especially if you are visiting in the home. But please make sure that you address literacy; that you keep all those materials in simple language; easy to read; lots of pictures. Try not to use too much jargon, because most of the time people will not understand what you are trying to say. So, keep it as simple as possible and make sure you spend some time with the family to really understand if they understood what you were saying to them.
CONSPIRACY OF SILENCE: (Palliative Care)
The term “conspiracy of silence” refers to the agreement reached by family members or professionals under supervision of health institutions, either explicit or unspoken, to alter the information provided to the patient. This agreement involves not expressing negative feelings or insubstantial optimism in order to conceal the diagnosis, prognosis, or seriousness of the situation, based on ideas of lessening concern or anguish over proximity of death, protecting the family, and avoiding emotional outbursts.
It is evident that the conspiracy of silence in palliative care has important consequences, and in most cases, such consequences negatively impact patients and their families.
Feelings of fear, anxiety, confusion, depression, unnecessary suffering, incomprehension, anger, and deceit are common in palliative care patients who face their relatives’ silence. At the same time, these feelings prevent them from recognizing and adapting to new situations and cause incapacity to conclude matters pending, loss of interest in life, increase pain perception threshold, unrealistic expectations of recovering, and deprivation of their right to exercise their freedom with responsibility at the end of their lives.
It is worth mentioning that patients prefer to know their prognoses and withholding it from them can cause stress, worsening of quality of life and loss of autonomy and opportunities to be part of the decision-making process. In addition, it can cause patients to receive insufficient treatment for refractory symptoms and their spiritual needs to be neglected.
Partial or absolute conspiring families usually refuse to accept a possible death. Thus, they set silent patterns that trigger communication blockages in the family system.
This action generally provokes family members to grow apart from each other and difficulty or psychological incapacity to deal with mourning, before and after the death of a loved one.
The conspiracy of silence also affects healthcare systems. By establishing a communication barrier around the true nature of the condition, connection failures among healthcare teams, patients, and their families are favored. It can cause failures in ongoing care and breaks down communication between all parties. From a healthcare team perspective, the scope of a conspiracy of silence brings about a feeling of dehumanizing end-of-life care processes whereby both patients and families are dissatisfied with the care provided.
Communication with Individual and Family (Palliative Care)
- When responding to emotions, it is important to evaluate and appraise the distress; offer validation, empathy, and support.
- When exchanging information, we need to identify the depth of information the patient or caregiver desires; acknowledge the abundance of information available online; and consider findings presented without seeming dismissive.
- When making decisions, it is crucial that we partner with the patient and family to identify goals of care and align the treatment plan with the stated goals.
- In order to foster healing relationships, we must develop mutual trust, understanding, and commitment as well as clarify goals and expectations of the patient and the provider.
- To enable self-management, we should encourage active engagement in all aspects of care; invite discussion and questions from the patients and families.
- And lastly, to manage uncertainty, we need to recognize limitations in knowledge, name uncertainties and address associated fears.