Facing your own mortality — or that of your loved one — can be terrifying. But perhaps more distressing for those in hospice care is facing a loss of dignity throughout their last days. No one wants to be remembered for being helpless in bed as they face challenges they never thought they would. That’s why the hospice care provider you choose must have a reputation for providing dignity and respect for patients as they navigate these scary last months and days.
So what does it mean to provide dignity and respect for patients during hospice? There are certain needs that must be met:
- Emotional: Healthcare professionals providing end-of-life should be adept at communicating, listening, conveying empathy, and involving patients and their families in decision-making, points out NCBI.
- Physical: To enhance and preserve dignity, symptom control and feeling comfortable in the chosen environment are both key. Also key to delivering dignified end-of-life care is effective management of physical symptoms such as pain, constipation, nausea and respiratory secretions.
- Spiritual: This includes both the need to be recognized as a person until the end of life and the need to know the truth about their illness. We’re talking about spiritual care that goes beyond religion (although that is a big part of it) and includes efforts by the healthcare provider to be present, to truly understand the patient’s perspective, and to foster a holistic care plan that puts dignity first and foremost.
- Practical: Everyday issues must be addressed with respect and care, such as managing finances, facilitating activities like reading or watching TV, spending time with family, giving choices as to the place of death and even storytelling, which has been proven to help those with dementia maintain their dignity of identity. Indeed, a person’s identity reminds us that memories of life experiences contribute to their identity in the present, says HealthCentral. In addition, maintaining normalcy through the everyday, as much as possible, can also contribute to the patient’s feelings of dignity.
Tips for Caregivers
As a caregiver for your loved as he or she goes through hospice, you are understandably overwhelmed with how to act, how to care, how to manage. After all, you’re grieving too. It can be tough to hide that and concentrate on how you’re treating your loved one. But in order to maintain a certain level of respect and dignity for the hospice patient, it’s good to keep a few considerations in mind:
Speak to your loved one directly. Don’t talk with other family members as if the person in the bed is not there.
Speak respectfully. Keep the patient updated on what’s going on, using simple terms without condescending.
Ask how your loved one wants to be cared for. Oftentimes we forget that ultimately, it’s the decision of the patient that dictates care. Involve them in the decision making every day — to the extent that they are able to communicate.
Provide many chances for touch. Hold hands, brush your loved one’s hair, look into their eyes, give plenty of hugs. The simple act of touching another human during their time in need, rather than avoid or recoil, can bring great comfort. Even patients who can’t talk can benefit from touch, with physical benefits raging from relaxing muscle tension to reducing swelling to stimulating circulation, according to Ecumen. But perhaps more importantly, touch also benefits the heart and the spirit.
Protect your loved one’s privacy. Make sure your loved one is covered at all times when receiving care or when receiving a visitor. You reserve the right to gently turn away visitors depending on your loved one’s pain level or mood. Don’t be afraid to act as the gatekeeper! Hospice is ultimately for your loved one to make peace with the end of life process, not to entertain family and friends.
Protect personal information. Be sparing with what you share with other caregivers or visitors. Don’t gossip or tell hurtful stories (even if you think they are benign). Restrict personal information (such as details about the illness or their needs) to those who need to know it: i.e., doctors, nurses and other members of the hospice care team.
Assist your loved with personal grooming. The hired caregiving team will do their best to keep the patient bathed, dressed and groomed, but it’s on you as the family member closest to them to go beyond the basics. Only you may know how they like to style their hair, or how they like to dress, or even how they like to trim their beard. If it were you in that situation, you would want to take pride in your appearance. Help them feel the same way. Physical appearance is often a big part of maintaining dignity.
Create an atmosphere of respect. Make sure the surroundings are peaceful. Brief visitors beforehand on the need for quiet, gentle, communication. Soft music is always helpful. Encourage visitors to talk to the patient, even if they are unresponsive, as the sense of hearing is one of the last senses to fade.
Patient dignity comes down to this: treating individuals the way you would want to be treated. The Golden Rule applies here as it does everywhere else.
Contact Pathways Home Health and Hospice
Contact us to learn more about our hospice care services and team at 888-755-7855. Rest assured, we are one of the country’s very first hospice providers, offering decades of experience helping people live their remaining days with comfort and dignity.
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From: How to conserve dignity in palliative care: suggestions from older patients, significant others, and healthcare professionals in Swedish municipal care
| Cognitive acuity | “There is a need to create a calm, harmonious environment with plenty of time and few distractions” (Physician) |
| “A clarity in the information given so that they can follow the line of thought and understand” (Physician) | |
| “We have to pick up, we lead them, remind them. It is our duty as nurses to give a bit of structure” (Nurse) | |
| “You simply have to say that it is part of the illness, of the whole illness situation, because you are shocked by everything and you are shocked by how people view you” (Patient) | |
| Functional capacity | “You might have to reconsider. Maybe today the goal is to take a shower and try to do that on your own. Maybe you need to rest before that and not plan anything else” (Nurse) |
| “That you ask the person how you want to be supported. Do you want healthcare professionals to come and help you, or do you want to try and do it as well as you can on your own?” (Patient) | |
| Physical distress | “To affirm the distress, that you see the symptoms, and that you see that it is hard. To lift it to the surface and not hide it” (Nurse) |
| “To be safe, and to have the assurance of knowing whom to turn to and not having to wait for hours on the telephone to talk to the healthcare worker. That does not work when you are ill; you want an answer now and not in five hours” (SO) | |
| Psychological distress | “To affirm the feeling that we do not have all the answers. Sometimes shit is shit I used to say. Sometimes it is miserable. Then you must be allowed to say: ‘Yes this is the way it is, so I understand that this is horrible for you.’ You can affirm the feeling, not just finding solutions. Because sometimes, I believe, it can be stressful if we say: ‘No, it is not so bad, we can do this and we can do that.’ Sometimes shit is shit.” (Physician) |
| “You have to take this very seriously... because you do not say everything directly to the healthcare professionals” (Patient) | |
| Medical uncertainty | “We rumble in, we go through the medicine lists, we examine and we talk. But how are they doing when we have left? That is when they need continuity and recurrent regular information” (Nurse) |
| “They need conversations, as a help to put words to what concerns them” (Nurse) | |
| “I think it is important that you ask the patient, what do you want to know, what do you reflect on? Sometimes we think we know what the person does not know, but it might be something totally different that they want to talk about” (SO) | |
| Death anxiety | “A lot of information is needed. To have a dialogue concerning what is happening, to make it a process. There is a lot of safety in that they know and that they are prepared, that they know a lot. I believe that understanding and information are very important. Imagination is often worse than reality” (Physician) |
| “The most common question is: ‘Will I be in pain?’ Then it can be comforting to talk about that there are medications for this” (Nurse) |