A normal reaction for those around a loved one receiving hospice care is to worry that one is not providing enough assistance or doing the right things to help their loved one. Unfortunately there is no easy answer for someone who asks “How can I start helping during hospice?” Every case is different, and the ability to help will depend on the setting in which the patient is receiving hospice care, the patient’s condition, the level of support needed, and the amount of care being provided.
However, there are some tips that a person who wants to help their loved while receiving hospice care can follow in order to assist their loved one. According to the National Institute on Aging, generally speaking, people who are at end of life need care in four areas—physical comfort, mental and emotional needs, spiritual issues, and practical tasks.
There are ways to make a person who is reaching end of life more comfortable. Discomfort can come from a variety of problems. For each, there are things that loved ones or a healthcare provider can do, depending on the cause. For example, a terminally ill person can be uncomfortable due to pain. Therefore, it is imperative that families have information about pain management and make sure the patient is communicating to their caregivers if they are experiencing discomfort. In fact, a family member should be mindful of the fact that caregivers often may not be in the home enough to track the amount of pain a patient is experiencing. Therefore, family members can help by an alerting a caregiver to any pain-related complaints the patient may be expressing in their absence.
Also, a patient may be reluctant to be assertive with caregivers. Therefore, it is important that family members work with the patient to express any needs related to pain management. In this capacity, it is important to make certain that the patient is expressing any concerns, not only related to symptom-based pain, but also on issues related to comfort, such as room temperature, food, or positioning in the bed.
By actively monitoring and communicating with caregivers about pain management, a significant problem encountered in hospice care can be potentially avoided. A recent national study showed that more than 18% of home hospice families believed that the patient did not get enough help with pain. These concerns are particularly relevant during the final stages of illness. Up to 70% of patients experience dyspnea, or labored breathing, in the last weeks of life. This can be distressing to both the patient and the family. In addition, more than 26% of families of recent home hospice families believed that dyspnea was not well managed. As such, advocating for a patient and making sure that communication between the caregiver and patient is clear and frequent can accomplish a great deal in remedying potential problems, and it can accomplish a great deal in ensuring patient comfort.
Mental and Emotional Needs
Given that a majority of hospice care is provided in a place other than a patient’s private residence, the amount of assistance that a loved one can offer will largely be limited to providing emotional support to the patient because hospice caregivers will provide a great deal of the physical care to the patient. In other cases, a loved one will be able to provide a wider variety of assistance to a patient beyond simply providing emotional support.
Regardless of the setting, the importance of emotional support cannot be overstated. It goes without saying that a terminally ill loved one will likely experience a range of emotions, including feelings of depression or anxiety. Particularly if a patient is alert in the final stages of their illness, these feelings may be intensified due to the lack of control or uncertainty the patient experiences in the situation. Loved ones can help in this situation by providing mental and emotional support. This can involve something as simple as engaging in encouraging conversations about feelings or just talking about something other than the situation at hand.
A terminally ill person’s normal feelings of anxiety or depression may also have a great deal to do with fear of the unknown, worry about leaving loved ones behind, or how his or her affairs will be managed. In this case, the best assistance a loved one can offer is providing an open ear, in which the terminally ill person can express his or her concerns. In some cases, as will be discussed below, anxiety may stem from practical concerns such as who will take care of the person’s final affairs or take care of surviving family members.
From the perspective of mental and emotional needs, it is important to never isolate a patient. A common reaction among well-meaning loved ones is to withdraw because they may have already begun the grieving process and may feel it is too much of an emotional burden to visit a terminally ill loved one. Some may feel that they would prefer to remember their loved one while healthy and not want to see them terminally ill.
If possible, family and friends should be encouraged to visit their loved ones and visit them as much as possible. These visits can take the form of a normal visit, just as the individual would have had while healthy, or they can be used as a way to share memories of good times, which in many ways can reduce anxiety and depression and help a loved ones to find peace near death. Even if a patient is unconscious, visits may be conducive to the patient as some medical evidence shows that an unconscious patient may still benefit from conversations around them and may even be able to hear. As such, it is probably never too late to talk or share fond memories.
The spiritual aspect of dying for some people may be one of the most important considerations. As such, helping a person feel supported on a spiritual level can occupy a significant portion of the care a patient receives in hospice. In many respects, the people nearing the end of their life may have spiritual needs just as important as their physical concerns. Helping with spiritual needs can include something as simple as finding meaning in one’s life by talking with loved ones.
Unfortunately, there is no playbook to follow when it comes to making a patient feel spiritually at peace. The amount of spiritual support a patient may need should be guided by the patient. In some cases, a person who is deeply religious may be more comfortable talking with someone from their religious community (such as a minister, priest, rabbi, or imam). Reading religious texts or listening to religious music may also bring comfort. In other cases, speaking with a friend or just quiet contemplation may be sufficient. Based on these considerations, it is important to understand the comforting role of faith, but also understand that spirituality can often be a deeply personal and private matter that a person may simply want to attend to on their own.
As anyone who has been involved in estate planning or has been tasked with handling a loved one’s final affairs knows, there are many practical tasks and loose ends that need to be tied up. For people who are used to handling their day to day business throughout their life, the prospect of leaving loved ones with a burden after death can cause distress or anxiety.
Even given the normal anxieties that can burden a terminally ill person, their worry can be compounded by the feelings of guilt about not being able to assist or find someone to help, especially because overburdened caregivers also may not be able to help. Helping out can take the form of something simple, such as doing small chores around the house and providing any help on larger matters that may need attending to such as retrieving paperwork or preparing a list of tasks that need to be dealt with. Above all, reminding a loved one that his or her personal affairs are in good hands can also bring comfort.
Helping During Hospice
The need to help is a common reaction to a loved one experiencing a terminal illness. Particularly if the patient is receiving care at home, the opportunities to help during hospice can be numerous. In light of the amount of time needed to care for a person who is receiving hospice care, loved ones can help even if they are not directly helping the patient by assisting other loved ones or caregivers. In fact, even if a patient is receiving hospice care in a hospice facility or a long term care setting, a person can help by volunteering to provide support or even offer to give those who spend long hours with a loved one time to take a break. Given the fact that this will be a highly emotional time, asking if there is any support you can provide either directly to the patient or those around them will be greatly appreciated. For more information on helping during hospice, contact Harbor Light Hospice by calling or by sending us a message online.