In the acute in-patient rehab world, we don’t often have to set therapy goals for hospice or palliative care. Mostly, we are working away with patients who are medically stable and usually have a prognosis for a good outcome. However, there are times as a Physical, Occupational or Speech therapist that we may encounter patients who are not recovering as we would hope. Your patient and team may have begun talking about transitioning to hospice or palliative care, once discharged from the rehab environment. How do we set appropriate therapy goals for hospice or palliative care?
Hospice Care vs. Palliative Care
So, what does all of this mean anyway? When someone starts having conversations with their physician and other members of their team on transitioning to hospice care or palliative care… how does that affect them, how does it affect their care, and will it change how they receive physical, occupational and/or speech therapy?
These are all questions that need to be answered, so we have a better understanding of how to maintain an appropriate plan of care with these patients.
First things first – in order to know your role in all of this, you need to gain a better understanding of the similarities and differences of these two services. Although many clinicians and healthcare workers use hospice care and palliative care synonymously… they are different.
Both services are provided to people living with serious and chronic illnesses and focus care on providing relief from the symptoms that the illness brings with it, as well as providing relief from the stress of the illness. People who are receiving hospice care, however, are usually at a terminal stage at that point and have a defined life expectancy of less than six months. Read more about Hospice Services.
One major goal of both services is to improve quality of life for both the patient and the caregivers. However, when receiving palliative care, one can still simultaneously receive life sustaining treatments, such as dialysis, insulin, etc. and have other care goals over and beyond improving quality of life. When receiving hospice care, those types of treatments are discontinued, and more weight is placed on providing emotional and spiritual support for the patient during the end of life. Read more about Palliative Services.
With both hospice and palliative care having their goals heavily influenced by improving quality of life, you may see now how our goals in therapy would need to shift away from a rehabilitative perspective.
Physical Therapy Goals:
So, as mentioned previously, the over-arching goals of care will now be shifting to a place where quality of life can be maximized. There are still a multitude of ways that skilled physical therapy services can be useful to patients that start palliative or hospice services.
This could take many different forms and for any mobility goal you make with a patient receiving hospice or palliative care, the first step is finding out what therapy goals are most important to them. These people will still (to a certain degree… depending on their condition) have the ability to strengthen their muscles, improve their balance, build endurance, and become a functionally safe member of their own lives.
For those that are very frail and weak, physical therapy may be needed to facilitate independence with bed mobility and to provide education to caregivers on proper positioning for comfort and to prevent skin breakdown. For patients able to do more, getting out of bed each day to visit with a grandchild or to watch TV from their favorite reclining chair is what keeps them going. Some people will find more value in being able to walk to the bathroom instead of using a bedside commode or bedpan. To them, that would be a very important goal to achieve in order to maintain a good quality of life. The key is to hone in on what they want and need their goals to be and use your skills to get them there. For the mobility aspect of goal making, it is all fairly intuitive and the only adjustment you may find yourself making is to not be as ambitious with the end point you chose – so shoot for walking 25 feet instead of 300 feet.
Generally, patients who receive palliative care or hospice care experience pain at some point in time. There are several different ways pain management can be approached in physical therapy, depending on the source of the pain. A diagnosis such as Cancer could be the culprit. Normally, physical therapists practice with the utmost caution when considering the use of modalities in the presence of a cancer diagnosis, often siting it as a contraindication altogether. However, in cases where the goal is to improve quality of life, a pain management goal is certainly appropriate to include as part of the physical therapy they receive. And it is also appropriate to consider interventions such as modalities to treat the pain, even if “traditionally” it would be avoided. Of course this would still need to be discussed with the rest of the team, including the patient, in order to ensure everyone is on the same page… but it could be the one thing that takes the edge off enough for them to enjoy daily life.
Pain (or discomfort or restlessness) could also occur as the patient gets nearer and nearer to the end of life. In this situation, modalities would not be the answer. However, physical touch can be a powerful tool for pain relief and decreasing anxiety, among other things. In physical therapy, there are many manual therapy skills we can use to help comfort these patients and decrease their pain. Soft tissue massage, myofascial release, manual stretching, gentle joint mobilizations are among a few that can be easily and effectively included in the plan of care for these patients. And as with many other interventions, passing these skills onto caregivers is paramount in order for the benefit to continue on between therapy sessions.
The wording of this type of goal may specifically state the inclusion of caregiver training. An example could be: ‘Patient will exhibit no physical signs of pain or discomfort while lying in bed through caregiver training of [insert manual technique].’ Read more about pain management strategies in the cancer population.
Occupational Therapy Goals
Basic Activities of Daily Living
Occupational therapy in many settings centers around basic activities of daily living, such as grooming, bathing, dressing, toileting, etc. As with the mobility goals that physical therapy will be focusing on… the ADL goals may be shifted fairly naturally after the patient expresses what is going to be most meaningful to them. Some patients will want to feel like themselves and be as self sufficient as possible in order to perceive their quality of life as being “good”. Others will only want to be able to feed themselves and therefore may need training on the use of adaptive equipment or may require caregiver education on what types of assistance or cueing they will need in order to continue being successful with participation in this task. Depending on what else is going on with each patient’s medical condition, eating may be one of the only activities that these patients take pleasure in at this stage in their care, so ensuring they can still have a certain level of control over this task would be meaningful to many of these patients.
Instrumental Activities of Daily Living
Some of the usual IADLs that occupational therapy would be incorporating into the plan of care are things like cooking/meal prep, medication management, light cleaning, etc. These types of therapy goals, for many of the patients receiving palliative care or hospice care may not be a priority to them, as other things will take precedent. Family or caregivers will often be stepping in to take over these types of activities in order to help support them through this time.
But outside of the more commonly worked on IADLs, the occupational therapist can explore some other ways of incorporating these goals into palliative or hospice care. This is an area that occupational therapy shines!
Getting to know these patients and families and figuring out what is most meaningful to them in their day to day life is what occupational therapy is all about! They may find that something like being able to use their cell phone (or tablet, or a family member’s device) will enable them to stay in touch with family more frequently or enable them to join and participate in a virtual support group. Many older adults are tech savvy and can navigate through a smart phone – search the internet, work facetime or skype, and add/play appropriate applications. But there are still many others who have not even attempted this “new” technology.
Having this type of goal and spending the time working through the “how to’s” would be extremely beneficial in providing emotional support and allowing them to enjoy this difficult time, as long as they are open to learning the basics. And as with anything, caregivers can certainly be incorporated into the goal in order to fill in the gaps if the patient isn’t fully understanding.
Therapeutic use of self
This may not necessarily be a goal in occupational therapy, but it certainly is a useful tool to use at anytime throughout caring for someone… and especially as they enter a stage where they would need palliative or hospice care.
In the rehab world, this type of intervention can get lost or forgotten in the midst of all the dumbbells, weighted dowels, theraband, and UBE’s. Treatment gets funneled into making the patients stronger so they can do things more on their own… (which is important)… however, sometimes the benefits of how we can use ourselves and our own experiences and feelings to connect with people is lost. Providing emotional support and encouragement will, by itself, provide an improved quality of life… but it will also help the occupational therapist to knock down some walls and find out what is most important to these patients.
Speech Therapy Goals
Depending on the person’s medical condition, they may or may not have developed some degree of dysphagia. Normally when this is identified in speech therapy, there would be goals to improve the function of the swallow and progress the patient to the most “normal” diet they can be on. Since palliative and hospice care therapy goals are not going to be rehabilitative in nature, the speech therapist can look at a few different things when it comes to their recommendations of diet level.
Firstly, determining what the least restrictive diet for that person will be may look slightly different than the usual recommendations in rehab. Speech therapy recommendations may be more on the conservative side when trying to rehab, in order to decrease risk of aspiration, etc. But depending on the patient’s medical situation and prognosis, a more liberal recommendation may be appropriate in order to provide more pleasure with eating… even if increased risk is present. This would certainly be on a case by case basis and after discussion with the patient and team.
If everyone is in agreement that they can move to the less restrictive diet, the SLP could shift the therapy goals to focus on all the appropriate strategies to make eating as safe as it possibly can be during hospice or palliative care. These strategies aren’t anything new… but they will be more the focus vs. trying to improve the actual swallow. These goals, like many listed here, can be met ‘through caregiver training’ depending on the patient’s ability to participate and understand.
If it’s still determined in speech therapy that the diet would have to be on the more restrictive side, the therapist can tap into all their experience they’ve gathered along the way to make certain diet textures more “palatable” so that they still may enjoy eating throughout this time. Mixing various foods, adding gravy/sauce (depending on the recommended texture), using food molds if it’s the visual appearance that turns them off to it… among other things!
The speech therapist could also consider making one or two exceptions if there is just that one favorite food they want to eat. So they would be on one diet level for all regular meals and snacks, but are allowed to have their one favorite food. This would take some careful assessment and a certain degree of training and modification of that food as appropriate… but may be a really great way to improve quality of life for them.
Cognition and Communication
No matter what the patient’s medical condition, they need to be able to communicate with their loved ones and caregivers. And with some patients, the form their communication takes may evolve as their condition declines. In speech therapy, this may pose a great opportunity to present various levels of communication strategies to the patient and caregivers. Having a variety of strategies readily available (even before they may need them) and presenting a list of “what if” scenarios would be invaluable to keep effective communication flowing. These may be very difficult conversations for all parties to enter into, but we are in a unique position to pass along our skills and prepare the patients and caregivers for the progression the disease process and what that could mean to how they are able to understand, be understood, and communicate basic needs.
A simple example would be if someone’s level of alertness waxes and wanes and that in turn affects the volume and clarity of their speech. Providing alternate forms of communication would be key – if they can still write, suggest a dry erase board; if they aren’t able to write, suggest a picture board. These may be obvious to us, but they certainly wouldn’t be to the patient and caregivers. And knowing that the patient’s medical status will progressively get worse, having approached this in a proactive way will help decrease anxiety felt by both the patient and family. They won’t have to wonder what to do if the “what ifs” happen… because you have prepared them!
The Right Next Step
The suggestions above are certainly not all inclusive of the ways physical therapy, occupational therapy, and speech therapy can shift their way of thinking about goals in order to meet the needs of patients receiving palliative or hospice care. But hopefully, you are starting to break out of the bubble you may have been working (and thinking) in!
There are many ways to provide these skilled services even if we know that in the end we aren’t making the patient “better”. Here are some simple steps to take after you find out that palliative or hospice care may be involved in the near future.
Stay positive. Don’t write your patient off, simply because they have a poor medical prognosis. Their life is not over… and you can still make a huge difference in how they continue to live! We aren’t out to perform miracles, but we certainly can bring much more hope, comfort, and quality to someone’s life that we think we can… simply by providing the skills we have!
Take part in a team meeting – early! And make sure the patient and family/caregiver are there. The care team needs to know what the goals of the patient are and everyone needs to be on the same page so that the progression of care and any processes that need to be put in place happen seamlessly.
Keep an open mind. There may be several different instances throughout the time you care for these patients that you need to shift your way of thinking and adjust your goals. But there is always some level of benefit you can bring to the patients themselves and to the caregivers.
So, take the time and listen to what your patients are saying and see what they may be going through. Make sure to formulate your goals in a way that will also achieve the over-arching goal of improving and maintaining good quality of life. Your patients and their caregivers will look to you for comfort, advice, and guidance – and it’s awesome that we can use our skills to provide what they need in what can be a quite desperate time.
“Have a heart that never hardens, and a temper that never tires, and a touch that never hurts.”Charles Dickens