If you or a loved one is fighting kidney disease, you may feel like your ongoing search for answers and support will never end. Even once the decision has been made to end dialysis treatments, that need for comfort and care continues. Making a choice to discontinue or step back the level of medicare treatments affects everyone. It can be helpful to have a list of the right questions to ask about hospice care:
- When should hospice care be considered?
- How can hospice care support a patient in renal failure?
- How can hospice support that patient’s family?
- What are all the benefits that hospice care can offer?
- What is the best way to open a discussion of hospice care with loved ones?
When should hospice care be considered?
Regardless of how expert a patient’s physician is or how loving and supportive the family has been, there can come a time when dialysis is more of a burden than a help for all concerned. Even if the patient has opted out of ongoing dialysis treatments, their medical needs remain, as do their personal concerns and hopes. Families often find themselves in a similar dilemma with medical questions and personal pain to cope with. Hospice care is comfort care that supports both the patient and their loved ones through the end stages of renal failure, including physical, mental, emotional and (if desired) spiritual support.
For all intents and purposes, a patient typically moves to hospice care when the prognosis indicates six or fewer months left to live. For patients who opt out of further dialysis treatments, their prognosis will depend on a number of factors, including severity of illness, amount of any remaining kidney function and other medical factors. The treating physician should be the one to determine approximate remaining time left.
How to request an evaluation for hospice care
The nephrologist (kidney doctor) or treating family physician can make a recommendation for hospice care. Patients and loved ones can also request an evaluation and act as their own advocate for moving to hospice care. It is also perfectly fine to request an evaluation for purposes of knowing more about what hospice care can provide when the time comes.
How can hospice care support a patient with renal failure?
The hospice team will follow the patient’s progress closely (and as frequently as daily) once the transition to hospice care has been made. Once the patient moves to hospice care, the focus shifts from curative to comfort care, with the goal being to make remaining time as comfortable and peaceful as possible for both the patient and their loved ones. Your hospice care team can provide full care for kidney failure patients.
Control of pain and illness symptoms
Pain/symptom management experts will work with the patient to alleviate pain and symptoms such as stiffness, fatigue, nausea, breathing difficulties, itching, loss of appetite, sleep difficulties, depression and anxiety and other related symptoms. The goal is to enhance enjoyment of the time remaining by controlling daily discomforts.
Hospice care can come to the home
Patients who wish it can receive hospice care while living at home. There is also the option to move to an assisted living or long term care facility and receive hospice care there. For patients whose symptoms have advanced beyond the point where home hospice care is feasible, inpatient 24/7 care may be recommended for a period of time.
A coordinated care plan for every level
The patient’s regular care team (nephrologist, treating family physician, et al) will develop a plan of care along with the hospice team. A team manager will be appointed to ensure clear communications between all members of the care teams. The hospice team, however, will coordinate administration of medications and will procure all the supplies and equipment required to manage the patient’s diagnosis.
Assistance with emotions and spiritual needs
The hospice setting is able to offer comprehensive resources for patients and loved ones to assist with emotional and spiritual wellbeing.
Assistance with financing
Hospice care services are typically covered by Medicare, Medicaid, Medi-Cal and private insurance providers. If families have additional financial concerns, they can speak with trained hospice social workers to locate the right resources for obtaining financial assistance. As well, social workers can support loved ones with end-of-life, burial and funeral services and the grieving process as needed or requested.
Caregiver (respite) care
Caregivers for loved ones struggling with end-of-life terminal illness can often experience a great deal of fatigue and stress, among other challenges. Hospice care includes respite care for the carers for up to five days if carers need a break.
Support through the grieving process
Loved ones have continued access to the hospice team for up to 12 months following the death, if desired, for support during the grieving process.
What are all the benefits that hospice care can offer?
If you or a family member has been given a diagnosis of a life-limiting or terminal illness, hospice is one option among many that you can choose. However, while many people have heard the term “hospice,” far fewer actually understand all of the benefits that hospice care can offer.
Hospice care itself is palliative, or comfort-based, by nature. The goal when transitioning from curative-based treatment to hospice is to support patients and families with resources that can assist with navigating this most challenging time in life. The ultimate goal is to give the patient the option to pass in the most comforting and familiar possible environment
Personalized attention and focus
Once a patient transitions to hospice care, the hospice team participates with the patient and their loved ones in the final stages of life. Since this is such a deeply personal and individual experience for each participant, the focus of the hospice care team is to listen, to pay attention, to advocate when needed and to continually provide the best possible quality of life for all involved.
Reduced need for hospital visits
Patients with serious illness may have to endure continual trips to the emergency room of the hospital and many are re-admitted to the hospital over and over again. This process can quickly become both exhausting and painful for the whole family. One of the biggest benefits of hospice care is a reduction in the need for continued hospital visits. A recent study highlighted a significant reduction in hospital visits for patients who were also receiving hospice care (44 percent for those not receiving hospice and 24 percent for those receiving hospice care).
Loved ones and patients are often very anxious about receiving the level of medical care they need in the final stages of life. Hospice eases this worry by providing the security of having access to medicare care and comfort whenever it may be needed – even around the clock.
What is the best way to open a discussion of hospice care with loved ones?
It is not uncommon for patients and family members to feel very strong emotions during the final days. These are also the days when some of the hardest choices must be faced and decisions need to be made. This can also mean that initiating a discussion about transitioning to hospice care can feel difficult – even overwhelming. But these tips will help you start the dialogue.
For patients initiating a dialogue with loved ones
First, make sure you know what hospice care can offer and what the main benefits are. You may have already familiarized yourself with some of the many excellent online resources and literature about hospice care – much of which can also ease concerns or misconceptions about hospice care that loved ones may have.
Find out what your loved ones do know
Here, you want to be sure your loved ones have a clear understanding of your diagnosis and prognosis – this is before you bring up the concept of hospice care. If your loved ones do not yet seem to be ready or able to accept your prognosis, it can be helpful to ask a trusted third party to be in attendance during your discussion (a member of the clergy, physician or close family friend can all be good choices). If necessary, you may even want to ask a third party to talk with your loved ones without you present so they can ask their questions and get used to the idea.
Have a discussion about future goals
At this point, each person may have very different goals for the future. For instance, if you are the patient, your biggest goal may be to live pain-free and enjoy your remaining days. For your loved ones, they may have other goals – but you won’t know what they are until you ask. Also emphasize that hospice care is designed to help the entire family achieve their goals – it is not about giving up, but about maximizing quality of life together and ensuring each person has the support they need.
Take the reins yourself
As difficult as it may feel, as the patient you must take the initiative to share your goals and wishes, especially since loved ones may feel too shy to bring up the topic on their own. If your wishes include hospice care, you may need to be the one to share this as well.
For loved ones initiating a dialogue with patients
Here, again, you will need to tackle the task of getting educated about hospice care benefits before opening a dialogue with others. You can find a great deal of useful information online and in literature. The patient’s medical team can also be a useful resource and you may want to speak with hospice personnel as well to get all your questions answered before you start talking with the patient.
Ask the patient’s permission
If you can open the discussion with something gentle – perhaps something like, “Would it be all right with you if we discuss some options for making sure you get the best care and support in the coming days and months?” – this can reiterate to your loved one that your ultimate goal is to ensure they are comfortable and supported no matter what the future holds.
Ask the patient about their priorities and concerns
Sometimes loved ones are so shy to talk with the patient that asking about future goals can really come as a relief. You could ask your loved one what they hope for, what they are afraid of, what kind of care they want, what environment is most preferable, and other questions to determine whether hospice would be the best fit.
Present hospice as one means of meeting the patient’s priorities
Hospice care offers many benefits, but it will be easier to outline them if you already know how those benefits may be able to meet your loved one’s cherished priorities and alleviate their concerns.
Reassure the patient that s/he is in control
You may need to reassure your loved one that it is their decision what kind of care to receive. For instance, if your loved one wishes to remain at home, hospice can usually accommodate this wish. As well, if the patient wants to continue to receive care from their own physician, hospice can also accommodate this.
Listen With Full Attention
Finally, it will be your listening skills that will serve you best as you dialogue with other loved ones and the patient about hospice and other options. Make your priority to listen to your loved one and really be sure you understand what they want to communicate. Resist the urge to persuade or debate. Plan for more than one conversation to take the pressure off as the dialogue continues.
Contact Harbor Light Hospice for Support
Harbor Light Hospice can significantly improve the overall quality of life for patients with kidney/renal failure and their loved ones. To learn more about our supportive hospice care services, call one of our locations or send us a message online.