Palliative Care at Home - Final Stage Care

By Howard Oliver

Palliative care is an interdisciplinary specialty resource that aims to relieve suffering and improve the quality of care and life for clients with serious illness, while supporting their families and loved ones. This article will discuss the various facets of the role of the Personal Care Manager (PCM) who helps a palliative care client stay comfortable and safe as they do pass on.

During the final weeks of life, new symptoms may appear, and existing symptoms might suddenly become worse. A Personal Care Manger (PCM), or a qualified Registered Nurse can and often does serve as the client’s primary confidant. The PCM monitors symptoms closely and responds quickly to calls for guidance and support, 24/7. The PCM has the professional knowledge and skills needed to help the client and his or her supports 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 physicians anticipating symptoms that may arise as the illness progresses. The physician explains what signs and symptoms may occur as end of life draws near.

The PCM can review the benefits and side effects of the various therapies and medications that may be tried to combat any uncomfortable symptoms. The idea is to ensure the client and his or her loved ones have a clear understanding of what the physician has discussed and what options they have. It is also important to try and eliminate any misperceptions that they may have. Although a palliative care client might say they want to die at home, this decision must be reviewed regularly.

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 made it possible to reduce the number of admissions to hospital 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 becomes involved in working with the family to deal with the emotions and stress of observing a loved one in their final stages of life. Families of a terminal patient might not know what to do or how to feel or even if what they are feeling is normal. Grief is universal, yet very individual. Grief can affect a person physically, emotionally and spiritually. The impact of grief may affect a family member’s interpersonal relationships with other family members and with the medical staff involved. PCM’s tend to list lots, offer emotional support to all, and provide ongoing options that help to maintain a calm, caring and peaceful atmosphere.

Family dynamics are complicated and often affect the way one grieves. PCMs are highly professional and do not judge the client or family Their priority is always to ensure the client is as comfortable as possible, regardless of the type of person he or she may have been prior to arriving in these circumstances.

Good physical care is mandatory for a palliative care client in the final stages of life. Superb physical care and oral hygiene is in order to maintain the client’s dignity. A nurturing sponge bath may soothe aches and pains unlike any pain medicines are capable of doing. Massages with lotion are an amazing treatment that allows a person to relax their mind and body. The physical care time also allows for bonding time with the client and PCM/caregivers which is imperative if trust is to be established.

PCMs help manage the medications that have been ordered by the physician. Patient controlled devices like the PCA (Patient Controlled Analgesic) device is very popular as it allows for 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 the client is 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 end of life care 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 has to pass on alone. Every client/person deserves the utmost respect and the gentlest of care at the end of his or her life.

Personal Care Manager’s consider being with a client as he or she passes on to be a gift and great honour. There is never a time in someone’s life where being a nurse can make more of a difference and that a nurse feels as though they can make such a significant difference.