Palliative care is specialized care that aims to relieve suffering and improve the quality of life for people with terminal illness, while supporting their families and loved ones. A palliative care team helps patients and their families by providing physical, emotional, and spiritual support through the dying person’s final months, weeks and days. This care, delivered at the patient’s home, may involve a number of different elements.
Palliative care doesn’t necessarily begin when the patient is near the end of life. People can be fully ambulatory and independent when they start seeking palliative treatment.
Over time, a slow progression of pain or excessive weakness starts to set in, usually accompanied by a decrease in appetite. This is generally the onset of the next stage of care: where the patient finds it difficult to get around as easily as before. This typically indicates that at home bed-rest is imminent.
From this point on, patients can begin to experience the issues and symptoms that result from immobility, such as muscle atrophy and skin breakdown. They usually become comfortable with their environment, and are ready to talk and emotionally connect with family and visitors.
In the final weeks of life, existing symptoms might suddenly become worse and new symptoms may appear. Our Personal Care Manger (PCM), a professional nurse, can often become the patient’s primary confidant. The PCM monitors all symptoms closely and responds quickly to all calls for guidance and support – 24/7. The PCM has the professional knowledge, experience and skills needed to negotiate the many complex issues that can arise during this period in the dying process.
There are many strategies for preventing a crisis in end-of-life palliative care. The Personal Care Manger works closely with the patient’s palliative care physicians. Regular communication with the doctors ensures that the PCM is well versed in what signs and symptoms my occur as the end of life draws closer, allowing them to prepare to provide specialized care.
Our PCM will review what has been discussed with physicians with the client and their loved ones regularly. This ensures that everyone fully understands what has been discussed, what the benefits and side effects of medications and therapies are, and what options are available. It’s important for the PCM to try and eliminate any misperceptions. They will also regularly review decisions that have been made regarding care, including whether the client still wants to die at home.
Issues based on the clinical course and the support that family and friends are able to provide must be considered. It is not unusual for a patient to become increasingly uncomfortable as the illness progresses, even when provision of care and services at home is optimal. If, in the end, a client decides to die in a health care facility that specializes in end of life care, being cared for at home by a PCM will still have reduced the number of hospital admissions for the patient during the period of advanced disease. When dying at home is not feasible, the goal then becomes helping the client remain comfortably there for the longest time possible.
The PCM also works with the family to deal with the stress and emotions of observing a loved one in their final stage of life. Families of an end-of-life patient may not know what to do or how to feel or even if what they are feeling is normal. Grief is universal, but very individual. Grief can affect a person on many levels – physically, emotionally and spiritually. The impact of grief may affect a family member’s interpersonal relationships with others, and with the medical staff involved. Our PCMs tend to listen a lot. They offer emotional support to all, and provide ongoing options that help to maintain a calm, caring and peaceful atmosphere.
Family dynamics are complicated and they often affect the way one grieves. Our PCMs are highly professional and do not judge the client or the family. Their priority is to ensure the client is always as comfortable as possible, regardless of the type of person he or she may have been prior to arriving in these circumstances.
Superb physical care and oral hygiene care is mandatory for a palliative care client in the final stages of life in order to maintain their dignity. A nurturing sponge bath may soothe aches and pains more than any pain medicines are capable of doing. Massages with lotion are an amazing treatment that allows a person to relax both their mind and body. The physical care time also allows for bonding time with the client and their PCM and caregivers, which is essential if trust is to be established.
The PCM helps manage the medications ordered by the physicians. Patient controlled devices like the PCA (Patient Controlled Analgesic) device are very popular as they allow the client to be involved in controlling their pain. The PCM acts as an advocate for the client if the pain is not being adequately managed and they are experiencing breakthrough pain. The PCA pump can be adjusted by the physician so the pain will again become managed.
In the last moments of a person’s life, they may not be able to “leave” until everyone has come to say goodbye or until everyone has left the bedside. The PCM is trained to manage these final moments as they treat the dying process as a continuation of the circle of life. Many clients die within minutes of family members leaving the bedside for the first time in weeks. When family members leave, the PCM sits and holds the client’s hand, so no one will pass on alone. Every person deserves the utmost respect and the gentlest of care at the end of their life.
Personal Care Managers consider being with a client as he or she passes on to be a gift and a great honour. There is never a time in someone’s life that a nurse feels as though they can make such a significant difference.