What is Hospice?

Hospice care is a form of palliative (rather than curative) care, wherein the focus is on making the terminally ill patient as comfortable as possible rather than curing the terminal illness. Within the United States, patients become eligible for the Medicare hospice benefit when a doctor and the hospice medical director agree that the patient is terminally ill with less than six months to live.[1] It is not limited to care facilities but also is provided in private homes, group homes, and larger care facilities.[2] Typical hospice care providers include the patient’s personal physician, the hospice physician or medical director, nurses, chaplains, and volunteers.

Within my own hospice volunteering, all of my patients live in assisted residential care homes, which are staffed 24/7 by a staff of caretakers who provide for meals, sanitation, and companionship. Other patients at our hospice are in full-service nursing or rehabilitation centers, and others live in a private home typically with a family member who continues to provide for the needs of basic living.

Contrary to popular belief, hospice care is not solely for the elderly but also applies to younger people with terminal illnesses. In my own case, however, all of my patients have been over the age of 70. This post will outline lessons learned from my experiences so far with elderly hospice patients in the environment of group homes. It will be targeted towards the prospective hospice volunteer in need of initial advice before visiting group homes.

What challenges do elderly hospice patients face?

Because patients enter hospice care for different kinds of terminal diagnoses, the challenges that patients face do vary depending upon the diagnosis.

Dementia

A majority of the patients I visit suffer from some form of dementia but at various stages. With some patients, it takes the form of delusions about how various medical staff are holding the patient against his or her will for malevolent reasons. Less severely, patients may believe that caretakers are not going to feed them their next meal or enjoy putting them through the pain of using the restroom or taking baths. For others, they truly believe that they actually do leave the care home on a regular basis to go out on recreational activities related to what their hobbies were in the past.

“Hi, [name]! How have you been today?”

“Well, I went fishing today!”

It happens at times that the patient, confined to the group home 24/7, believes this because he is wearing fishing attire or otherwise has a long history of having enjoyed such a hobby or line of work. Another patient whose history involves cattle farming seemingly has lost no knowledge of his old line of work despite suffering from dementia in almost every other field of knowledge. It’s an easy conversation starter for the volunteer if he or she can get to know the patient’s history.

While conversation about hobbies or travel is a means by which a volunteer is able to engage in lively and pleasant conversation with the patient, complaints about caretakers are harder to deal with. The hospice volunteer must strike a careful balance here. He or she must not completely invalidate the patient by rejecting the patient’s notions in a mean manner. At the same time, however, simply agreeing with or validating harmful delusions may offend the staff and not actually bring comfort to the patient. Gently communicating assurances that caretakers have patients’ best interests in mind has seemed to be the best option. Limiting time of conversation may also help prevent patients from thinking about and then entertaining more harmful delusions with the volunteer.

Lack of Mobility

Most of my patients have suffered a severe lack of mobility. In some cases, the patient refuses to believe or accept their lack of mobility and they try anyway, which often results in falls. Combined with varying levels of dementia, patients often do not accept their lack of mobility and do not listen to caretakers’ instructions to remain seated until they can be helped. One particular patient I have was often “confined” between a wall and a dining table with a chair to sit on as she lightly — but not painfully — struggled to stand up out of a sense of independence.

As a volunteer, it is important to know one’s boundaries before offering mobility help to a patient. Even a minor adjustment of a limb’s position can cause harm when done by someone who does not know why a patient is in a particular physical position. Speaking with the hospice nurse in charge of the patient is the best way to come to understand what boundaries need to be kept in this regard.

Difficulty Hearing

For the hospice volunteer, difficulty hearing is likely the most difficult hurdle one may have to overcome, as the volunteer’s role in a group home setting mostly involves listening and speaking. Some patients remain able to read large text or may also enjoy children’s books. The patient may respond to written text with gestures rather than words in turn.

Difficulty with Verbal Communication

Patients suffer from various forms of difficulty with verbal communication that require different responses on the part of the volunteer. Complete inability to speak is a common ailment and perhaps the most intimidating for the new hospice volunteer, especially one who may be introverted and not used to being the “driver” of the conversation such as myself.

Nearly all patients with verbal communication issues enjoy the volunteer singing for them. Again, this may be difficult at first if you’re introverted, but the initial nervousness can be overcome! Singing hymns is a great way to calm a nervous patient down as well.

The following points address particular verbal communication disabilities that I’ve observed and how to address them.

Aphasia

Although aphasia comes in many forms[3], the particular form of aphasia that I’ve encountered comes in the form of “word salad,” in which a patient’s speech resembles a completely different conversation than the one that a communicative person is trying to have. A volunteer may ask a simple question like, “What did you have for breakfast?” and the reply may have something to do with a word resembling “breakfast” but will otherwise be non sequitur, even as the tone in which the patient delivers the reply is still as if the patient is responding to the actual question. It is important to remember as a volunteer that the patient’s thoughts behind the words coming out may still be entirely valid. It will vary from patient to patient. The volunteer should continue to engage the conversation but may feel free to drive the conversation somewhere other than the seemingly random directions where the patients sounds like he or she is taking it. The volunteer should also remember that talkativeness, even in the form of word salad, is a good thing in a terminally ill patient. Most hospice patients eventually exhibit signs of decline, and lack of talkativeness is certainly one of these. Encouraging it is generally a good thing.[4]

“Stuck on Topic”

I make it a priority in my volunteer time to make sure that I’m sharing the Gospel with my patients regardless of whether I believe they are fully understanding. The Holy Spirit is just as able to penetrate the heart of a dementia patient as He did with so many of us whom He has drawn to faith in Christ.

One very practical concern that a volunteer may experience is that the patient with dementia is stuck on a particular topic, often related to his or her line of work, even though the volunteer is sharing something completely different or perhaps much more important. The volunteer may choose to stay with the patient’s topic or patiently continue in sharing Scripture.

The Holy Spirit is just as able to penetrate the heart of a dementia patient as He did with so many of us whom He has drawn to faith in Christ. Click To Tweet

Nutrition

Because patients have little to no control over their nutrition other than deciding whether to eat what is in front of them, this is an area where the volunteer can keep tabs. One question I ask all of my patients on a regular basis is whether they are eating well. This may be framed in different ways depending on the patient’s mental capacity. “Are you eating well?” is fine for those of sound mind. A simpler question like, “What did you have for breakfast?” works better for those with limited mental capacity.

The volunteer may also keep tabs on what the patient is being fed outside of the meals and snacks provided by the group home. I had a patient at a rehabilitation hospital at one point who had a strong liking for chocolate, so much so that I often found her with a small box full of them. Suddenly when the box was no longer there regularly, the patient had more energy and mobility (albeit bedridden). I surmise that the chocolate was supplanting the nutrient-dense foods that she actually needed.

So as to maintain good relations with the group home staff, it is important to do whatever is necessary to help the patient eat well. This includes not bringing food that will interfere with the nutrition that the staff provides. Group home staff are also responsible for knowing which foods the patient is medically unable to consume. My own presence has also typically caused patients to eat less, so I avoid being with the patients during meal times for this reason.

Family Assistance

As hospice serves patients in a variety of home settings, interaction with family may vary depending on the setting itself. A volunteer who visits patients in private homes will generally have more family interactions than one who visits group homes or full-service hospital settings. As my patients are all in group homes, my interactions with family members are sparser, as our interactions occur when both of us happen to be in the group home at the same time. The frequency with which family members visit patients in group homes varies depending upon distance traveled and the relationship itself. Many able-bodied spouses of patients visit their spouse in the group home on a daily basis. Children and grandchildren, on the other hand, may visit their parents less frequently. As a volunteer, it’s a good thing to keep tabs on how frequently family members come to visit one’s patients. Visits are often a great stress reliever for patients, whereas the lack thereof can be a great stressor. If in a patient’s bedroom, the volunteer may observe whether there have been any changes to the room since the last visit, e.g. flowers, greeting cards, decorations.

Family members generally appreciate volunteers’ prayer and concern. The volunteer should ask family members what their concerns are and how they might be praying for them. I usually pray on the spot with a family member before letting them go. The volunteer can also provide simple ministry of presence and comfort during times of bereavement, especially when the chaplain is not able to be physically present at all times.

Theological Considerations

Comfort in God’s Sovereignty Versus Mankind’s Stubbornness

There is a common thread woven throughout our culture which states that a person will tend to ensure he or she ties up loose ends before passing away. Final words are exchanged with children or other loved ones. Apologies for long-unconfessed infractions are offered. Some have the opportunity to do a few last favorite activities or visit a long-desired destination. But when it comes to being right with the Lord, even the literally dying can often be stubborn despite pleas to receive the Gospel.

I’m not sure what I would do in the position of hospice volunteer if I didn’t believe in God’s sovereignty over the salvation of every individual person. I can’t imagine the endless thoughts of wondering what would have been if I had said something a little bit differently, tried a different angle, visited just one more time, or any number of things with the false assumption that salvation is actually under my own control and not the Lord’s. We can further take comfort that Christ died while we were still sinners (Rom. 5:6), not after some action to earn it.

Differing Faith Backgrounds

As with the rest of one’s societal interactions, the majority of patients, even within a Christian hospice, are not born-again Christians, and the same is true of family members as well. Volunteer interactions with patients are far more free in terms of one’s ability to bring the Gospel forward openly without invitation, but one must exercise a certain degree of sensitivity with family members, especially those bereaving a very recent loss or those who have a particularly strong background from other traditions. As my interactions with this regard have largely been with Roman Catholics, I have efforted to make my communication about the Gospel more about the Gospel itself and less about the distinctions unless the door to note the distinctions opens. The volunteer should take comfort that the Holy Spirit is always there in one’s interactions, thus one need not fret.

Conclusion

Volunteering with the hospice has been some of the most rewarding ministry I’ve ever done. It was a small hump to come to terms with what I was about to do when I first began, but now it has become quite comfortable even in the midst of the hardest challenges therein. God’s grace is sufficient even for me, the introvert, to be doing ministry like this, and I would encourage most any Christian to give it a try. It is my hope that this is a small help in that journey.

[1] “Medicare Hospice Benefits,” Health Care Financing Administration, March 6, 2009, https://web.archive.org/web/20090306191044/https://www.medicare.gov/publications/pubs/pdf/hosplg.pdf.

[2] “Hospice Care,” National Hospice and Palliative Care Organization, accessed July 29, 2017, https://www.nhpco.org/about/hospice-care.

[3] “Aphasia Fact Sheet,” National Aphasia Association, accessed July 29, 2017, https://www.aphasia.org/aphasia-resources/aphasia-factsheet/.

[4] The exception I will make to this point is if the patient’s energy level is a significant consideration, especially when under the influence of prescription pain medication. A sudden draining of the patient’s energy due to the combination of high conversation and prescription pain medication can make life harder on the caretakers.