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End of Life Care – Article from our Experts

Sooner or later, every human being will face death

Often, the end of life is associated with cancer, assuming that all the patients under our care suffer from this disease. However, we don’t consider that the current demographic situation reflects  population ageing.

This has also caused a change at an epidemiologic level, with a  significant increase of chronic diseases, directly related to age, and the complications they entail.

This sets out the following question: what is sickness, and what is ageing? Ageing is a decrease of the organisms’ capacity to adapt to situations of stress, which therefore causes the response to the sickness to be different, and so are their symptoms. Moreover, it’s important to remember that elder patients present a higher comorbidity, therefore causing symptoms to overlap with the causes, creating more uncertainty.

All this takes us to view the ‘end of life’ care for these patients in a different way, because they present certain peculiarities in its approach:

The most important decision is to establish the reasonable resignation to the specific treatment. The famous ‘how far do we get with the treatment’. Patients with non-oncologic diseases present a slow evolution and resigning to a certain treatment is more difficult because the patient and their families do not often perceive its seriousness as they would with an oncologic disease. Diagnosis is more difficult, and the risk of error, higher.

In these patients, there is not a specific point in time where only palliative care is provided, but there is a continuum care oriented towards end of life. End of life and the process that takes us there is an uncertain moment, sad, stress, strain… an infinite variety of feelings that moves us and can be extremely difficult to manage for the patient and their families.

In order to respond to the various needs of the patient that appear along the process, it is necessary to have a multidisciplinary strategy, where each of the members in the team can assess and accompany optimally.

The approach should be holistic, this is, ‘teamworking with doctors, nurses, social workers, psychologists… and in the centre of this team, there’s always the patient and their families, as a unit, as a whole’.

We must pay attention to all their needs, them being spiritual, physical, emotional, or pharmacological, having all the knowledge and abilities to approach and care for the patient and their family, to provide a high-quality attention at the end of life.

When we are taking care of a loved one who is approaching the end of life, one needs to learn what to expect, how to improve the management of the house, what to do if there is a pick in the suffering, if they can no longer get up from bed, eat, drink, or even stay awake. For this reason, family members have a key role in the care of this patient, and we must be close to them and know to what extent they can, or want to, be involved in it: we need to anticipate future needs, such as a wheelchair, for when the patient can no longer walk, special mattresses, walking aids… Overall, we provide them knowledge, value, and strategies to solve all those challenges that will arise along the process.

The last days of the end of life must be a stage where the objective is to achieve peace, relief, quality of life, and quality in the process of dying: perceive a situation of absence of physical pain and relief to the emotional one, which will then positively impact the spiritual condition of the patient, family, and main carer. It is important that the family notices that ‘non communication’ doesn’t exist, because when we don’t talk with the sick about their sickness, we are giving away a lot of information: by crying in secret, a concerned face, uncontrolled gestures, changes in the way of communicating with them, fear shown to their questions, realising they are not taken into account for future plans, etc.

It is important to have a communication that’s trustworthy, private, calm, where they feel safe to express their needs, worries or fears, to therefore help them accept their new situation, understand it and enable them to make present and future decision.

We must show our availability and will to listen, accompany, and facilitate their communication, a fundamental part of our daily care accompanying them with the truth. A truth that they need to hear, maintaining the hope that their lives will have a meaning.

Most of the people that know they are close to the end of life can reflect on their believes, values, faith, and meaning of life. They might have questions about how they will be remembered; or think of forgiving or being forgiven by someone else; can find relief in listening why you value the relationship with them and how you will remember it. Having the courage to be present, taking their hand, can help calm and comfort not only their body but also their soul.

We can and must listen and be present, attending their doubts, fear, asking open questions so that the sick person can talk about their physical or spiritual concerns. We can try to share special moments with their loved ones, like reading together, listening to music, or sharing a religious ceremony that’s important for the person. The patient needs to be treated with all due respect as the human being they are, prioritising their believes and wishes, offering the possibility of continuing going forward despite their limitations, naturally, towards a dignified and serene end.

End of Life Care - Article from our Experts

In a hospital context, offering this environment to the patient and their family is, sometimes, a difficult task, due to the current epidemiologic situation, as either because we close to visits or the isolation because of covid-19 infection, we have a patient that’s isolated from their support core: their family. This creates frustration and helplessness for the carer, the patient, and the family.

We must get over these feelings and take on a proactive attitude, because there are many ways to provide the patient and their family with that so much needed contact. Videocalls, for instance, allow the patient to stay in touch with their family when circumstances wouldn’t allow it (closed to visits or isolated patient because of covid-19). We can offer these to the patient and the family, agreeing on a date and time for the various members of the family to see and talk with the patient. The videocall is an intimate moment, so we must ensure as much privacy as possible for the time the patient and family need. These moments of contact bring to both the patient and family a closure, that will be important to go through the grief afterward.

Visits are allowed when the patient faces their last days, offering the possibility for a family member to be with them. This person represents the entire family, and as such, we must accompany and advise them during the process. They also take the responsibility of managing the family unit, so we must support and advise them whenever they need it.

Contacting the health personnel over phone can also be a relief for the family members at home, who feel helpless for not being able to take care of them during their last days. In these situations, we can offer them to bring a certain meal that the resident might ask for (if circumstances allow), photographs or some objects that are important for them, so the family can feel part of the care of the sick person in their last days, and for the patient to feel the warmth from their family.

In those moments where the patient is alone, is the health professionals who must be responsible of identifying their needs, either physical, spiritual and emotional, and provide them with care to cover them; some time alone talking with a patient about their concerns, providing them with a calm environment, offering space for the patient to express freely and without judgments, taking their hands, calling the family if the patient asks for something they can help with, answering to their demands for information…

Our care is for the sick person, and not their sickness, accepting death and improving their quality of life, building a strong alliance between the patient, their family, and the care professionals. We care with our hands, our glance, with peaceful movements in a difficult moment, we care with a special gift to feel empathy for another human being that suffers, without losing the perspective of strength that comes with wearing a uniform that represents you as a care professional and your organisation at the same time.

We take care for the patient as if they were our own family, because, in these difficult times that we are living, we are somehow their family too. We must always remember that the main right we must respect is that of a dignified death.

 

 

Written by:

Mª Dolores Penela Núñez Home Support Team,

and

Sara Dinarès Cabrerizo, Palliative Care Unit,

Both from Sisters Hospitallers’ Sagrat Cor de Martorell Hospital (Barcelona).