The traditional model of hospice care typically involves discussions with a patient, his or her health care provider, any caregivers and any family members. Above and Beyond is ready to help you with these conversations.
The Decision for Hospice
The decision to move someone into hospice isn’t always an easy one to talk about or even to accept for some. But the consensus is that the patient’s health has declined to the point that they may only have six months or less to live. This moves the patient into a different category of care that focuses more on providing comfort and a decent quality of life, rather than regular check-ups and great efforts to seek medical improvements.
But in the case of someone with aphasia, the hospice experience could vary. Someone who is unable to speak may still be requested to find ways to give consent or share any thoughts or questions. This could mean writing down important items, or, if this also can’t happen, working with a caregiver and family members to figure out more effective methods of communication.
If a patient can’t even perform these, they may still be able to answer basic yes or no questions by blinking or moving their eyes or squeezing someone’s hands.
What is Aphasia?
For readers unfamiliar with aphasia, it’s the general term for a brain injury that limits communication. After a stroke or other trauma, some people may lose the ability to speak, read or write. There are many variations of aphasia, including some people who find themselves unable to come up with the right word in the right sentences or context, some who insert random words in their conversations, or some who are unable to use any words at all.
People with aphasia can work with home health professionals to adjust to this new situation, which could be temporary or permanent. This treatment also can include physical therapy to re-learn the mechanics of speaking, reading or writing, such as forming letters or exercising the throat muscles; or rehabilitative therapy, so they eventually may be able to return to the workforce.
The Role of Hospice
When someone with aphasia is placed under hospice care, there is less emphasis on “healing” their aphasia and accomplishing any long-term therapeutic objectives, but more emphasis on making them as comfortable as possible in the time they have left – this includes making sure any of their needs are able to be clearly communicated, or even that they’re able to swallow comfortably.
Patients on hospice with aphasia can still benefit from a visit from a speech pathologist, who may be able to sit down with them and their family to look for ways for everyone to interact with even if primary methods of communicating are no longer effective.
Solutions can be simple, such as giving pencil and paper or a slate to patients or their caregiver so they can jot down questions or statements. Or perhaps a mobile device like a digital tablet can be used to type or at least mark letters, words or symbols to convey a point or have text read out loud. For those who can speak but no longer write, a computer with speech software can allow them to dictate.
While these processes may take longer than a basic dialogue, it’s important to have some of these conversations, even basic discussions like plans for a funeral, disposition of any finances, or any special requests or wishes.
It’s also important to be respectful of the patient who may not like their current situation, especially having to speak slowly, have things read to them or learn different methods of communication.
Moods can be low as someone approaches death, and there is also a higher possibility of depression with someone battling aphasia.
But beyond the ability to facilitate communication with patients with aphasia, the role of the hospice worker is really similar to patients without aphasia: focus on easing any pain or symptoms, providing quality time with family and helping everyone prepare for death.
A hospice worker can also offer information about respite care resources to family members and caregivers who may need a brief break from this difficult process. He or she may be able to arrange someone to watch the patient, or to take the patient to a local respite care center in the community if one is available.
Family members can serve an important role in these discussions as well. Since the patient with aphasia may no longer be able to communicate adequately, a family member may need to make recommendations about end-of-life care options. They can discuss their situation with a hospice nurse, everything from their environment to medication options.
Interestingly, treatment of aphasia in a hospice setting has some parallels to Alzheimer’s or dementias. In both cases, the patient may not be able to give consent or provide a lot of details when discussing their condition with hospice staff, so this task may fall to family members. But with aphasia, the patient is mentally present but may not be able to express themselves easily.